February 28th, 2013- Today has been a very long day. We had our clinic appointment early this morning for a final blood check which had stayed about the same. We checked into the hospital after but had to wait around for about 3 hours before a room was actually available. Once we actually got in the room we had to wait around while all the orders were finalized so I didn’t start my first dose for this round of therapy until around 7:00pm. They started me on rituximab this time, which I have gotten before but they are still worried about allergic reactions. Due to this concern it starts very slowly and I am still getting the same infusion as of 11:38pm and I think it has awhile to go yet. I have been trying to get a little bit of sleep but with the machine beeping every 30 minutes for the nurse to speed it up I haven’t had much success. I am also on the overflow floor which is nice but not what I am used to so it is making me a bit more anxious.
I only got to see Bryce a bit this morning as we attempted to sneak in some time with him but also make sure everything was packed and get out the door. We will start our normal routine again of afternoon visits tomorrow but it is already jarring to be gone from him. He did start saying “ma ma ma ma” as we were getting ready this morning which was a very nice going away present.
February 27th, 2013- I had a good last day at home but it is definitely stressful thinking about the time I will be away. My appointment showed that my liver counts were still improving slowly but were not yet normal. Due to the fact that they aren’t I will be getting some different chemotherapy this time around to go easier on my liver. I also had a chest CT which I assume was to check on the status of my pneumonia but to be honest I am not sure. During my Monday appointment they mentioned a head CT but when I got there it was ordered as a chest CT. I did have them call the doctor and they said it should only be chest so I will be asking about that one tomorrow!
Bryce was amazing for me on the last day of my break from it all. I pushed myself extra hard to keep up with everything he did today and I am definitely going to sleep well tonight. I helped cook dinner tonight while Bryce watched and it felt great to cook again. Family dinners are definitely going to be a big part of the day for our little man! He already enjoys sitting at the table with everyone and just watching. I already miss him even before I have gone and I know how hard even a week without him will be, but his daily visit will keep me going and I will be back soon.
February 26th, 2013- Today seemed to fly past but was a very good day. I am extremely worn out but in a good way. We did have an appointment with the reproductive medicine people today which was pretty much what we expected. I will get one final depot lupron shot at the end of March in order to keep me in faux menopause, which was done in an attempt to protect my ovaries from the chemotherapy. Unfortunately the total body irradiation is a whole other concern but due to the fact that it isn’t targeted there isn’t anything that can really be done. They brought up several options that David and I had already discussed and then we scheduled our March appointment for the shot. I can’t say enough how thankful we are for Bryce and how much easier it makes accepting these kinds of possible side effects. At this point I just have my fingers crossed that I don’t permanently wind up in early menopause when all this is behind me. I have another blood test appointment tomorrow and an appointment to get a CT scan to check on my original brain bleed. Once all of the results are in they will be nailing down exactly what chemotherapy drugs I will be getting for the next week. One more day off after today, hopefully my appointments won’t take all day!
Bryce has been such a good motivator to keep me up and moving while I have been home. We took him out for an afternoon stroll and with him as a nice distraction I conquered a few hills to help rebuild my leg strength. We fed him peas for the first time tonight and amazingly he seemed to actually enjoy them. They were everywhere by the end as he continues to be extremely expressive with his hands but none the less most of them did wind up eaten. We gave him a nice bath afterwards to put him to bed all clean. A quick bottle to top him off found me in my favorite spot, holding a sleeping Bryce. I will definitely be using the memory of these moments when I am back in the hospital on Thursday.
Play time with Mommy and Bryce.
What are you feeding me Mommy?!
Yet somehow I continue to eat them.
February 25th, 2013- I had my appointment today to make sure my liver counts were still improving. The doctor is still not sure what chemotherapy treatment that I will be getting this round. We will be going in for another blood check on Wednesday morning and will be checking into the hospital sometime Thursday to start my treatment. I will be in the hospital for around 5-7 days and will be out for recovery pending any unexpected problems. I also got my transplant schedule and as long as things stay on track I will begin the whole process on March 25th with the official transplant day on April 19th. Now that everything is laid out before me I can continue to set small goals to conquer each day.
My appointment made me miss most of the morning and afternoon with Bryce, but he was in good hands with Ama, my mother (grandmother in Mandarin). When we arrived home Bryce was ecstatic to see us, which melted my heart. It is so good to be home with family! We got lots of play time in to make up for our lost time and by the end of it all he was pretty tired. We fed him a new baby food, which was a mixture of his two favorites, bananas and peaches, and he absolutely loved it. He was smiling and giggling while we were eating dinner. After his final bottle we started to put him down for bedtime and he fell asleep in my arms while I sang to him. Up until I got sick I always sang to him before bedtime and even during the day to help calm him down when he was fussy. I am so glad that even now when I sing to him he immediately calms down. I can’t help but be worried that every time i’m gone for awhile, like the month for transplant, that he will change so much that he will no longer recognizes me. I am so glad that I have a few weeks at home with him and my family, but it is a tease yet I know that in the end this is for the best and I will have every moment with him after i’m done.
Nom nom nom foooood!!
February 24th, 2013- Kaopung goes the Bryce as he knocks down day 62 with Mommy! Today has been thankfully uneventful but tomorrow I will be finding out exactly how the next week will be going in terms of my treatment. My blood tests in clinic are mostly to recheck some of my liver counts which will dictate which chemotherapy drugs I will be getting. They are doing their best to allow my body to recover as much as possible before transplant so they don’t want to continue using drugs which are harsher on my liver if my counts remain somewhat abnormal.
Bryce has been cutting his upper right front tooth and has been taking its arrival amazingly well. He is always so well behaved it can be hard to tell if it is really bugging him so I hope my little man is doing as well inwardly as he portrays outwardly. He is continuing to make his little noises that will someday soon make my heart sing when they say ma-ma. I love spending every moment with my son and husband, and I cannot wait for all of this to be behind us.
February 23rd, 2013- I thank God everyday for letting me progress in my fight against leukemia. Small wins are a definite boost but each one is immediately followed by what has to happen next. I am ready to face each step but dread having to step back out of my life in order to stay in the hospital. I feel like even the briefest moment with Bryce is irreplaceable and that I miss so many when I leave him. It is an interesting mental balancing act to see the immediate need for giving up that time in order to trade for so many more years.
My irreplaceable moments with Bryce were all amazing today. He has been slowly getting back into tummy time, which he never truly enjoyed, and had over an hour today where he was rolling all over the place without complaint. I say this now but I absolutely cannot wait to see him begin to crawl and walk even if everyone says I will look back on this time and miss it immensely. I obviously have an extra strong desire to see each new development and know that it has not been missed.
February 22nd, 2013- I definitely wore myself out today both physically and emotionally. I tried to get outside a little bit to really make the most of the few days I have before going back into the hospital. My mom took me out to lunch to a nearby place and we tried to keep me as separate as possible since I have to take my mask off to eat. I also went to look at wigs to see what size might fit but it appears that I may need a pretty small size that they didn’t have at the time. I was really worn out by the time we got home and I think being so tired made me extra emotional. I have been so happy about being in remission and being home that the pending return to the hospital really hit me today. I am stressed about continued inpatient treatment and then the long stay for transplant not to mention still feeling like I haven’t yet won. David wouldn’t let me stay down for long though and quickly used some tactical Bryce time to remind me that I have so much love around me and more than enough reasons to fight this disease. I know that even after transplant it will be hard to get the fear from the back of my mind but continuing to focus on the positives of each day and a bit of time I believe I will get through it all, not to mention a big dose of faith.
Bryce was a joy today and as always managed to be the perfect dose of laughter to keep me going. He was a bit of a handful towards the evening because he didn’t take a third nap today but he quickly improved after his feeding time. We fed him solids just before we ate dinner and he sat with us during our dinner in his high chair. At the end he started chewing on one of his toys and making loud grunting sounds, uh oh, and we knew we were in for a large present. We let him finish but when we went to change him he had exploded out of the front and back of his diaper! A quick attempt at getting him clean found him kicking and swinging his arms into places they shouldn’t be so we opted for a nice rinse and relaxing bath time. Oh the things I find funny now that I have a son. I couldn’t stop laughing as David attempted to get Bryce as clean as possible while I helped keep his hands out of his mouth, Bryce’s not David’s hands. After his bath we fed him his last bottle and he fell asleep as he finished the last drop. I cannot believe how easy going he can be and how lucky I am to have such an amazing little man.
February 21st, 2013- I AM IN REMISSION!!! I had a nervous morning and had some issues sleeping last night because I couldn’t stop thinking about my appointment. It is such a huge weight lifted but at the same time I know that my journey is not yet over and I still have a long road ahead. The good news is that we are able to move forward with preparing for my transplant and my eventual cure. I will be back in the hospital for approximately a week starting around Wednesday for another round of chemotherapy. This round is meant to keep me in remission until transplant which will hopefully take place at the beginning of April. The doctors are concerned with some of my elevated liver counts and will be checking things on Monday in order to decide what chemotherapy drugs I will be receiving this month. Thankfully this round doesn’t mean a month long hospital stay but that doesn’t change the side effects unfortunately.
Once we are ready to move forward with transplant in April I will be facing four days of intense chemotherapy and total body irradiation. The transplant itself is relatively simple but unfortunately the prep is what makes recovery difficult. I will know a lot more as the time comes but what I do know definitely scares me. However, I know that no matter how bad a day I may have I am working to ensure that I have many many tomorrows. I am so grateful to even be moving forward because I know there are many people who are not even able to take this next step.
Bryce has been my angel throughout all of this and is such a beacon of love and hope for my entire family. He always brings a smile to everyone’s lips and can manage to make anyone laugh at the drop of a hat. Today he rediscovered his wrinkly nose face but has added his old man lips to the face which had David dying of laughter. I will never stop being thankful for how everything managed to work out with him and David before all of this started.
Daddy keeping Bryce from floating away.
Bryce wants to help Mommy write her blog.
Rawr, get that toy!
February 20th, 2013- I had a relaxing family day which helped me forget about tomorrow for at least a few hours. We are finally getting a routine with Bryce and it is beginning to feel natural again. It was hard to come home and feel like I had to learn his day to day all over again, he changes so fast. I woke up with a sore left arm, PICC line arm, but it did fade once I got up and started moving around. I think I slept funny but I will definitely be asking them to check things out. The big news day is tomorrow at clinic for my biopsy results so please keep me in your thoughts and prayers.
Bryce was extremely expressive and happy today. The best time was when we fed him his solids at the end of the night and he would giggle at every little noise David or I made. He also sat with the family afterwards for our dinner and was the perfect little addition that made everyone smile. David would pick up his toys from under his highchair and he would twist all around trying to see him. It is so amazing to watch him track everything and learn how to interact with his environment. I love my family more than anything and want to get better for them as much as for myself.
February 19th, 2013- Today has been a good day for me. I am finally getting around a little bit better since being at home. My biopsy site is still a bit sore today, but not as bad as yesterday when I had it done. My ankle is surprisingly all better, but I am still trying to take it easy as I build up my strength in my legs. Being in the hospital for two months caused the muscles in my legs to deteriorate, plus the steroids didn’t help. I am definitely not looking forward to the month long stay in the hospital again once I am ready for transplant, but I know it’s for the best. I hope we hear some good news on Thursday, but until than I am going to be very anxious.
The whole family went for a nice long walk with Bryce today. We opened up more of his Christmas presents that we have been unable to give him until now. He loves his tool bench, but appears to enjoy the yellow back more than front of the toy. I think his favorite color is yellow because he is always picking up his yellow toys. It is always so interesting to see what he winds up playing with that we wouldn’t have ever expected.