Sorry that it has been a few days since the last update. With going back to work and trying to get extra rest, its been hard to sit down at the computer and keep everybody updated. Hopefully on her FB page I can start doing small daily updates. I could go on for another two or three paragraphs about how Isabel's smile and laugh gives me hope for another day. I just sit and watch how she can still be the Isabel we all know and love. I keep reminding myself that even though the darkest days are in front of us. If this is the Isabel that we get back, it will be worth all the pain we have endure. Its unfortunate when she starts getting use to all the wires that are hooked up to her. Or how she knows which ones have to be unplugged for her to go to the bathroom. But I guess like anything else she adapts to her situation. She still doesn't care for the nurses too much, but she does have one or two she will actually acknowledge lol. So I'll keep the intro shorter this time and on to the updates..............................
Tuesday: You could label it D-Day. This was the day that we sat down with the oncologist to discuss the results of all the test and ct scans and pet scans. We would also discuss her treatment schedule. And be able to answer any questions we have. It was a heart wrenching day. I mean you know what it is but you just want to get on to what the treatment will be like. We had a general idea but this would actually be in black and white. As per usual in our time here Ivey had called me to let me know that instead of the 3:30 appt we had for this day, if I came earlier she would have time. So with that I left work as soon as I hung up the phone. Why wait for another 3 1/2 hours (btw it was noon lol) when the answer was a car drive away. But instead of being able to sit down with the doctor right away. We ended up having to wait for 1 1/2 to have are meet. One thing that did change about the diagnosis is that instead of it being the very rare Burkitt's lymphoma, it was actually Diffused Large B Cell. Which was a more common type of lymphoma. I know what when I first started this updates I joked about she might as well have a rare lymphoma. But honestly it was a bit relieving that it was one that was more common. This meant that they had seen it more and treated it successfully more times. It was also confirmed that she did have cancerous cells in her spinal fluid. Which I kinda concluded seeing as how she had already had two lumbar injections of a chemo cocktail. This is also when we found out instead of the too good to be true discharge of this weekend. She was actually looking at a more realistic discharge of Octorber 29th. That took us back for a min cause we realized it would be another almost two weeks before are Warrior Princess could return to her castle. We sat and discussed and asked questions for a good 45 mins. We got alot of good question from the doctors lol. We discussed the different drugs she would be getting, when she was getting them, and what side effects we could expect. The one that we knew but still found it hard to stomach was the hair loss. As anybody that has been around Isabel knows she loves her long curly hair. Also anybody that knew her when she was a baby knows it took her a good 3 1/2 years for it to be so long. I remember for the longest time when she was younger, she would get mistaken for a boy. Never mind the fact that she had all pink on, and two earrings lol. Maybe its cause she looked so much like Papi. I had had the thought when this was first going on that with chemo most likely comes hair loss. So I thought a fun way around that was to buy her disney princess wigs. Although the idea sounds like it would be fun. The actually reality of having to explain to her why her beautiful hair had to fall out was one i still am trying to grasp. You go from glossing over heavy topics like this when your kids are young. To having to be faced with breaking bad news after bad news. I guess this will prepare us for when she is a teenager, and ask some tough questions. At this point I'd rather talk about boys then telling my daughter she has cancer and will loss all her hair. But right now I'm thinking about a Rapunzel (Tangled) angle. Something along the lines of just cause she had her long beautiful hair cut off, she didn't loss her special power. She just had to look deeper inside to find it. But we will be talking to the nurses and specialist here to see what advice they have. So basically her treatment schedule looks like this 2 weeks home 3 to 5 days in the hospital. So with that we begin the journey that only positive energy, inner strength and love can guide us.
Wednesday: Isabel had a wonderful night of sleep. Barely waking up when they took blood at 4 am. For the life of me I don't understand why they have to do it in the middle of the night. But I guess nothing at the hospital is suppose to make sense. Like why parents can't get discounts at the cafeteria. Isabel woke up refreshed and happy as usual. Today would be her third lumbar injection of chemo. Which meant her going down to the OR again and her not being able to eat till after her prodecure. As the day progressed she become a bit more cranky. But who could blame her she was hungry and I had told her we had to go downstairs again. Last time we went down on Monday I had to carry her since she was a bit nervous. This time I found a better way to distract her. We switched her to the gurney but I got her comfy with her blanket and took the portable dvd player. Its surprising what a little Sponge Bob will do to calm her down lol. When we got there she said "Papi I've been here before, I want to go back upstairs" lol. She started to get tense and complained she was hungry. I asked her what she wanted when she woke up from the doctors checking her out. After a little thought she told me she want: sphaghetti, chocolate milk, green jello, banana & fruit loops with a smile. I tol d her I would text Mami her order and have it ready when she went back upstairs. That seemed to keep her content for the mean time. Sadly I couldn't stay until she woke up I actually had to go to work. Ivey told me that after the procedure this time she had to lay down there for two hours. Needless to say she was starving when she got upstairs. And proceeded to dine on her requested menu. Not too much else excitement for the day. Until I got a call at work from Ivey saying they had to take Isa to get a chest x-ray because she wasn't taking deep breaths. Also her oxygen levels had been lower then they would have liked. Something was mentioned that if it didn't get better it could be a punctured lung. Luckily that wasn't the case and she just needed a treatment from a neublizer. But there was a moment like not something else don't make their be complications now. On a positive note they did give her bubbles so that it could help with her breathing. Guess it was a fun way to trick the kids to blowing a bit deeper. So with bubbles in the room so ended another day of battle with our little warrior princess.
n
Thursday: Of all the days this week I would say this was the most relaxing for Isabel. There was no procedures scheduled minimal interruptions by the nurses. Isabel had the best sleep of the week. She didn't even budge when they took blood at night and she slept in till 9. She was able to wake up and eat her breakfast. And got to spend the day with her Mami. She even managed to not ignore her nurse for once and actually spoke with her lol. She got a nice long nap in and had her lunch. Nothing too exciting just a day of rest for are Warrior Princess. We did do one thing today that was a first since are stay at the hospital. Me and Isabel went for a stroll around the cancer ward. She had mostly been staying in bed and sometimes we would get her to sit in her chair. But the doctor had mentioned that she needed to start walking around. So with that Papi and Isa went for a little tour around the place. The first go around she was a bit more hesitant, but the second time around she seemed to get more comfortable. And when I asked her if we could do this again tomorrow she smiled and nodded her head. We set her up in the reclining chair in the room and she proceeded to relax there. It was nice to not have her just in the bed. As I look around her room I see a wall full of pictures of family and a ton of supportive cards. I know that this is the beginning and the end will be just as sweet.
Tuesday: You could label it D-Day. This was the day that we sat down with the oncologist to discuss the results of all the test and ct scans and pet scans. We would also discuss her treatment schedule. And be able to answer any questions we have. It was a heart wrenching day. I mean you know what it is but you just want to get on to what the treatment will be like. We had a general idea but this would actually be in black and white. As per usual in our time here Ivey had called me to let me know that instead of the 3:30 appt we had for this day, if I came earlier she would have time. So with that I left work as soon as I hung up the phone. Why wait for another 3 1/2 hours (btw it was noon lol) when the answer was a car drive away. But instead of being able to sit down with the doctor right away. We ended up having to wait for 1 1/2 to have are meet. One thing that did change about the diagnosis is that instead of it being the very rare Burkitt's lymphoma, it was actually Diffused Large B Cell. Which was a more common type of lymphoma. I know what when I first started this updates I joked about she might as well have a rare lymphoma. But honestly it was a bit relieving that it was one that was more common. This meant that they had seen it more and treated it successfully more times. It was also confirmed that she did have cancerous cells in her spinal fluid. Which I kinda concluded seeing as how she had already had two lumbar injections of a chemo cocktail. This is also when we found out instead of the too good to be true discharge of this weekend. She was actually looking at a more realistic discharge of Octorber 29th. That took us back for a min cause we realized it would be another almost two weeks before are Warrior Princess could return to her castle. We sat and discussed and asked questions for a good 45 mins. We got alot of good question from the doctors lol. We discussed the different drugs she would be getting, when she was getting them, and what side effects we could expect. The one that we knew but still found it hard to stomach was the hair loss. As anybody that has been around Isabel knows she loves her long curly hair. Also anybody that knew her when she was a baby knows it took her a good 3 1/2 years for it to be so long. I remember for the longest time when she was younger, she would get mistaken for a boy. Never mind the fact that she had all pink on, and two earrings lol. Maybe its cause she looked so much like Papi. I had had the thought when this was first going on that with chemo most likely comes hair loss. So I thought a fun way around that was to buy her disney princess wigs. Although the idea sounds like it would be fun. The actually reality of having to explain to her why her beautiful hair had to fall out was one i still am trying to grasp. You go from glossing over heavy topics like this when your kids are young. To having to be faced with breaking bad news after bad news. I guess this will prepare us for when she is a teenager, and ask some tough questions. At this point I'd rather talk about boys then telling my daughter she has cancer and will loss all her hair. But right now I'm thinking about a Rapunzel (Tangled) angle. Something along the lines of just cause she had her long beautiful hair cut off, she didn't loss her special power. She just had to look deeper inside to find it. But we will be talking to the nurses and specialist here to see what advice they have. So basically her treatment schedule looks like this 2 weeks home 3 to 5 days in the hospital. So with that we begin the journey that only positive energy, inner strength and love can guide us.
Wednesday: Isabel had a wonderful night of sleep. Barely waking up when they took blood at 4 am. For the life of me I don't understand why they have to do it in the middle of the night. But I guess nothing at the hospital is suppose to make sense. Like why parents can't get discounts at the cafeteria. Isabel woke up refreshed and happy as usual. Today would be her third lumbar injection of chemo. Which meant her going down to the OR again and her not being able to eat till after her prodecure. As the day progressed she become a bit more cranky. But who could blame her she was hungry and I had told her we had to go downstairs again. Last time we went down on Monday I had to carry her since she was a bit nervous. This time I found a better way to distract her. We switched her to the gurney but I got her comfy with her blanket and took the portable dvd player. Its surprising what a little Sponge Bob will do to calm her down lol. When we got there she said "Papi I've been here before, I want to go back upstairs" lol. She started to get tense and complained she was hungry. I asked her what she wanted when she woke up from the doctors checking her out. After a little thought she told me she want: sphaghetti, chocolate milk, green jello, banana & fruit loops with a smile. I tol d her I would text Mami her order and have it ready when she went back upstairs. That seemed to keep her content for the mean time. Sadly I couldn't stay until she woke up I actually had to go to work. Ivey told me that after the procedure this time she had to lay down there for two hours. Needless to say she was starving when she got upstairs. And proceeded to dine on her requested menu. Not too much else excitement for the day. Until I got a call at work from Ivey saying they had to take Isa to get a chest x-ray because she wasn't taking deep breaths. Also her oxygen levels had been lower then they would have liked. Something was mentioned that if it didn't get better it could be a punctured lung. Luckily that wasn't the case and she just needed a treatment from a neublizer. But there was a moment like not something else don't make their be complications now. On a positive note they did give her bubbles so that it could help with her breathing. Guess it was a fun way to trick the kids to blowing a bit deeper. So with bubbles in the room so ended another day of battle with our little warrior princess.
n
Thursday: Of all the days this week I would say this was the most relaxing for Isabel. There was no procedures scheduled minimal interruptions by the nurses. Isabel had the best sleep of the week. She didn't even budge when they took blood at night and she slept in till 9. She was able to wake up and eat her breakfast. And got to spend the day with her Mami. She even managed to not ignore her nurse for once and actually spoke with her lol. She got a nice long nap in and had her lunch. Nothing too exciting just a day of rest for are Warrior Princess. We did do one thing today that was a first since are stay at the hospital. Me and Isabel went for a stroll around the cancer ward. She had mostly been staying in bed and sometimes we would get her to sit in her chair. But the doctor had mentioned that she needed to start walking around. So with that Papi and Isa went for a little tour around the place. The first go around she was a bit more hesitant, but the second time around she seemed to get more comfortable. And when I asked her if we could do this again tomorrow she smiled and nodded her head. We set her up in the reclining chair in the room and she proceeded to relax there. It was nice to not have her just in the bed. As I look around her room I see a wall full of pictures of family and a ton of supportive cards. I know that this is the beginning and the end will be just as sweet.
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