April 14th, 2013- Today has been much of the same overall but I did get some news that I wasn’t clear on before regarding my treatment. To keep my immune system and eventually my brothers cells, as the donor, suppressed in me I will be receiving a drug call fk or fk506. This is a major help in limitting the effects of graft versus host disease. I will continue taking this drug for about a year which I had known. Unfortunately, they have to work out the correct level to give me and make sure that it keeps at a pretty consistent level so it will be given via IV while my counts recover. The IV infusion begins in the morning of day -3 and is a constant drip, so I will not be free of the IV pole for my entire stay in the hospital for even a minute. I am not enjoying that thought much but obviously it is well worth it to keep me from having a bad reaction to the transplant. My brother also started his neupogen shots this evening which will boost his counts to help with the collection of his cells as well as ensure that he isn’t left with nothing when they are done.
Bryce had his usual amazing visit this afternoon which kept my spirits high. He tried some homemade baby food that one of the nurses brought us but was a bit uncertain of how he felt about the whole thing. He has been really picky about the more substantial baby foods that we are trying out so we are hoping the homemade stuff will turn his attitude around more quickly. Not that he has any trouble devouring enough cereal but eventually he will need more. The good news is Bryce seems to be getting used to a daily routine which includes the hospital and was very playful the whole time. He makes my days pass more quickly but it still seems like a long time before I get to be home for him again.
April 13th, 2013- My day has been more of the same but I have definitely not been feeling very well. I still have a persistent neck ache which is most likely the cause of my headaches and overall my body is already feeling pretty run down. I am still hoping that the neck pain will fade in the next day or two as my body gets used to the line in my chest. It is hard to have started off feeling poorly so quickly when I had been doing so well at home. I know this will all pass and be worth it but it can be hard to remember that sometimes.
Bryce had a very long visit today and we even kept him during and after his nap. He was extremely active given his limited space and had everyone laughing with his usual antics. He seems to be happy enough to eat until he pops, especially if it is baby cereal, which is good but I am never completely sure when to cut him off. He is starting to eat more solids throughout the day and we dropped a bottle from his schedule. To make up for some of the lost fluid he likes to go to town on his sippy cup of water during solid time. I already feel like I am missing so much and continue to will myself to get through this and recover quickly so I can be home with him.
April 12th, 2013- I had a bit of a rough start today but did end on a relatively good note. I got extremely nauseous after trying to get some hospital breakfast in me and wound up throwing it back up a bit later. Surprisingly this is the first time any of the chemotherapy has made me throw up, hopefully it doesn’t happen again. I did feel better briefly afterwards and managed to eat some cereal which started to bring back the nausea. I fought off the feeling but wasn’t really up for lunch and eventually the nurses gave me an early dose of my nausea medicine via IV. After that IV dose this afternoon I had a pretty good day. I was able to eat dinner without much ado and my constant neck tightness and headache from yesterday’s surgery has started to fade. I still have several days of continuous cytarabine to go but things are definitely looking up.
Bryce came to visit this afternoon and this time we had the pack and play for him to hang out in for a bit. The sides let him play without risk of his toys or him winding up on the ground but he quickly decides he would like more space. I enjoyed our time immensely even though I was still fighting my headache, neck soreness, and nausea at the time. Things are getting even more real during this final treatment but Bryce is keeping me well motivated and focused.
April 11th, 2013- I took a break from my blog during my break from the hospital but today I am back in to begin preparing for my bone marrow transplant. I was feeling very well at home and my blood counts have been staying normal, so I decided to focus on my family during my free time instead of worrying over what was to come. The results of all my tests came back relatively normal but one of my pulmonary tests came back a tiny bit low. Due to my slightly elevated liver counts during this whole ordeal and that one test the doctor recommended a change to my treatment last week. I was previously going to be receiving two days of chemotherapy and four and a half days of total body irradiation twice a day. I will now be getting seven days of chemotherapy and a single dose of radiation the day of transplant. Both treatment protocols are intended to wipe out my bone marrow completely and just vary in terms of how they are handled by the body. The radiation can be particularly hard on the organs and so they went ahead with the change after my tests.
I came in this morning at 6:30am for surgery and got my central line placed. I went straight to my room upstairs after a short recovery and began receiving chemotherapy this afternoon. I will be getting cytarabine for five continuous days without a break and then will get cytoxin once for the next two days. I am not looking forward to being stuck to my IV pole for that long but thankfully the cytoxin after is not all day. I have a single day of nothing and then radiation in the morning followed by the bone marrow transplant on April 19th.
They count days before the transplant as negative days leading up to transplant on Day 0 and what they call my second birthday. I will be posting my days in relation to Day 0 because 100 days is my new biggest goal. The first 100 days are the most crucial time to watch for major graft versus host disease and other concerns.
Bryce began crawling about a week ago which has been such an amazing gift to see before I came back. He is still growing like a weed and I swear if I watch him closely enough he will visibly grow before my eyes. Figuring out what he can reach is his new favorite game and our scary moments but it is such a joy to see my little man moving. All of his teeth also decided to start coming in so he now has eight teeth which just makes his smile that much cuter. I am a little worried about what he will do at the hospital with such limited crawl space but he did visit today for a bit and did okay-ish. I am definitely a bit stressed jumping back straight back into treatment today but as always I have so many amazing reasons to stay strong.
My little man passed the 8 month mark!
Grass is far more interesting than posing for pictures.
One big happy family!
March 27th, 2013- I woke up with a pretty sore back this morning thanks to my biopsy yesterday. The pain didn’t really stop me from doing anything but it was definitely uncomfortable all day. I had my dental cleaning this afternoon and I found out that they amazingly do fluoride tray impressions for cancer patients free of charge and continuously provide fluoride. People never cease to amaze me with how supportive they can be of others when they need it most. The best part is that now I don’t have to find a way to work in yet another appointment at Shands. I still have several appointments tomorrow that will take up a good part of the day but one less appointment always helps.
Bryce had a great day today and even joined me for my dentist appointment. He was extremely into the new places and all the new people which kept him well behaved as always. He was a stinker at bed time tonight and went down a few times only to roll over and smile up at as with no intention of going to sleep. No matter what he always brings a smile to my face and I am ready to face all of my upcoming challenges just to get back home with him.
March 26th, 2013- It has been a very busy week with what seems like endless appointments. I found myself with very little time in the evening before falling asleep to face yet another day. I kept putting off catching up with my updates and as expected it got more daunting to catch up as the days past. I decided to write one big post to cover all the days I have missed.
This past weekend my brother, William, and his wife, Jessica, got into town. They came a bit early to help us out with Bryce and to visit with us before my transplant. It is so great to have them around because I don’t get to see them often. I also tried to relax this weekend with some success, but I was dreading the craziness of this week.
I have been feeling pretty well overall and I am slowly getting through this crazy week. Monday I had 5 appointments that started first thing in the morning. My first appointment which was a dental consult was disappointing and a waste of my time. From my understanding I thought I was suppose to get a dental cleaning as well as impression of my teeth for a fluoride tray. We waited an hour and a half for the dentist to arrive (he was late) and found out that this would not be a cleaning. He just looked at the x-rays of my teeth to make sure they were cavity free and told me that I needed to contact my primary dentist for a cleaning. The dental assistant then came in and told me she had to leave and to call her to schedule another appointment for the tray impressions. I used to work in a orthodontist office and she could have done the impressions while we were waiting on the dentist to arrive instead of making me come back yet again. I have such a busy schedule that working in one more appointment around her schedule is a huge headache! Luckily my primary dentist was able to fit me in on Wednesday (tomorrow) which is my only free day and we were going to spend that time with Bryce and take him to the Butterfly Garden at University of Florida, but now that may not happen. After my pointless dentist appointment I had several other long meetings with the financial counselor, social worker, and transplant coordinator during the rest of the day. They also worked in a huge amount of lab work at the bone marrow clinic. I think they collected about 15 vials of blood from me! By the time we got home I was completely exhausted from everything.
Today we had an early appointment to talk to the research nurse about the transplant and its side effects that I will be experiencing. I will be getting admitted April 12th and the next two days I will be getting a high dose chemotherapy drug called cytoxan. Then, the following week I will be getting full body irradiation every day, twice a day, ending on Friday morning. After the final radiation therapy I will be getting my brother’s stem cells (transplant). The nurses say they treat transplant day as a second birthday and have told David that he will have to get me birthday gifts and a cake. I am so scared about this whole next step especially after talking with the research nurse. The side effects are going to be worse than before because of the high dose chemotherapy and full body irradiation. Everything that I have gone through mucositis, GI tract issues, diarrhea, fluid build up, and nausea is going to be twice to triple the pain. They also warned me about the graft vs host disease and that I do want a mild case of it, but nothing else. They say is helps my chances of not relapsing, but its not the end of the world if I don’t get it. I also had my bone marrow biopsy today after talking to the research nurse. It went pretty well, but of course it did hurt. The nurse practitioner gave me morphine and of course I took an ativan before my appointment to help with my nerves and pain. When it came down to starting my adrenaline kicked in and the morphine and ativan had no effect on me. The nurse practitioner was very nice and told me to do breathing exercises to calm myself down and she would be back in a little bit to start again. The second time around I was calm as a cucumber and she proceeded to inject local anesthetic in to my lower back to numb the area all the way to the bone. I am not going to lie it was very painful and I started to cry. After she numbed the area she then inserted the drill needle to get a piece of my bone for the biopsy. This took a few tries since my bone is apparently very soft, but she did get a good sample. The worse part was when she sucked out my bone marrow which always feels like lightening down my leg for a few seconds. The whole procedure took about 15-20 minutes. I wish their was a less stressful way to do these biopsies! The nurse practitioner also talked to my transplant coordinator and they decided that I no longer need my PICC line until I get my central line April 11th. So, they pulled out my PICC line after my biopsy. Yay! I no longer have tubes hanging out of my arm. After my biopsy we had to go across the street to the North Tower of Shands for a ECHO/EKG test, pre-op for my central line, and a pulmonary function test. We ended being at the hospital for 8 1/2 hours!!!! I shouldn’t be surprised since this isn’t the first time, but I am so tired of all of these appointments in one day. I cannot wait until next week…. mostly appointment free (hopefully)!
Bryce has been doing really well this past week. He is finally taking to being on his tummy much better and is shuffling around in circles but not yet crawling. He is loving having so much family around to lavish attention on him and is so cute all the time. We bought a few walkers since he is so happy on his feet but none of them let him get enough traction just yet to really get around. I am drinking in every second but this week is definitely taking me away far more than I had hoped. Hopefully the rest of the appointments stop taking up the entire day and I get to be home more in the next few weeks before transplant.
March 21st, 2013- My LP, spinal tap, went well today but as expected I spent the entire day at the hospital between waiting and recovery. The procedure did hurt a bit more than expected due to the fact that they had to reposition the needle after the first stick. I was able to sleep a bit during my mandatory recovery and I felt a lot better for it. We did get some good news that I will get the lupron depot shot in clinic on Monday so hopefully the insurance part goes much better. I am still feeling good overall and I am thankful for my quick blood count recovery with this round of treatment.
I had another shortened day with Bryce but I was able to get a lot of quality time in while I was home. He has been all personality lately and I love every second. The best moment of my day was putting him to sleep for the night which I had been too tired to do very often.
March 20th, 2013- My clinic appointment went well today and overall I had a good day. My blood counts showed that I am no longer neutropenic which is great for my food options, woohoo! I have been getting some pain in my hips lately but they did confirm at clinic today that bone pain is common with count recovery even without the booster shots, so hopefully it will pass soon. We had some more fun trying to work things out with the lupron depot fiasco and are now attempting to see if the clinic can get and administer the shot. The pharmacy showed that it would be covered as a medical claim but not as a straight pharmacy purchase. Unfortunately, the pharmacy can’t run it as a medical claim and the ob/gyn office is not allowed to directly purchase the shot which means I need to find an office that will, because working to get the insurance to pay us back a second time is out of the question. I am still nervous about my LP, spinal tap, appointment tomorrow but I know it really won’t be that bad despite my reservations. Almost through this week of go go go and on to a hopefully relaxing weekend.
Bryce had his usual bubbly attitude today and was a ton of fun. He has started to click his tongue loudly to everyone’s, especially his own, amusement. If he is in the mood he is even happy to click back and forth with me. The rain unfortunately limited my ability to get in any walks once I got home but he did go outside a decent bit with his Ama while we were gone. I stumbled upon a mother’s blog who’s 3 year old son has had leukemia almost his entire life and it further reminded me that no matter my difficulties having a healthy little boy is a blessing that outweighs any and all hardships.
March 19th, 2013- I had an appointment this morning with the ob/gyn to get another lupron depot shot to try and protect my ovaries. The shot should keep me in menopause until I am done with my next round of chemotherapy. Although, the doctors are not certain if it will work when I get the full body radiation. It’s worth a try to help keep things protected as much as possible. Unfortunately, there was a mix up when we went to the appointment and I didn’t get my shot. We never received a prescription for the shot and therefore were under the impression that the office had it available. The nurse helped us a bit by researching options on how we could get the shot paid for if our insurance won’t cover the cost. I did however call my insurance and they said that it would be covered. I am a bit skeptical since we are still fighting my old insurance on my last lupron depot shot. We will find out tomorrow after clinic when we pick up the prescription at the hospital. The next two weeks are filled with appointments, appointments, appointments that last ALL day. I think the only day of the week I have no appointments is next Wednesday and I’m pretty sure that day will get filled by a clinic appointment. It’s all part of me getting better and I’m up for it all.
Bryce was very playful today and enjoyed his tummy time a surprising amount. We are trying to get him to crawl before I go back into the hospital again next month. We also went for a nice walk this afternoon and sat outside for a bit. My little man absolutely loves the outdoors! I hate missing all of his big moments and it seems like he is growing so fast. He is my little angel that gives me the courage to go through this whole journey to beat leukemia.
Bryce being cute as a button
March 18th, 2013- Today has been a very long day! We went to clinic this morning and did not get home until 5:30pm. I actually had some counts today which is good, but my symptoms the last few days pushed them to give me blood even though my hematocrit was borderline. I received two bags of blood and luckily I did not need any platelets. For once I actually feel pretty good after receiving blood. Hopefully the good feeling will last as my blood counts continue to rise. This Thursday I will be getting a spinal tap done as an outpatient. I am a bit nervous about it since it will be done as outpatient and I will be recovering at home afterwards. I also will be getting another bone marrow biopsy next Tuesday which i’m frightened about since my last outpatient biopsy actually hurt since I really wasn’t pre-medicated. They gave me ativan, but for some reason it did not work at all. I will get through it all and be past my transplant soon.
Unfortunately we didn’t get to see Bryce for long when we got home. We did however go for a nice long walk before his dinner. He loves to be outside and no matter his mood it instantly improves once he steps outside. David and I read a few books to him before his bedtime bottle and he instantly went to bed on me after eating. He is such a sweet and easy baby. I am so grateful to have him!