Monday, December 29, 2008
We had been sitting in our room when we heard a knock on our door. My husband answered the door and told me to bring our daughter to the door because she had a visitor. When I set her down she saw the little boy standing at the door and went running up to him and they both immediately gave each other a big hug. I just watched thinking they must know that the other is going through the same things. They aren't even old enough to speak to each other and yet they know what the other is going through and can still communicate comfort and love to one another. It was really quite touching to watch. They stayed in the door way for awhile playing catch with one another and then one of the nurses brought us a gymnastics mat for the two of them to run around and play on. The other little boys mother was gone and the nurses were watching him while he received a blood transfusion. They thought he might like to see another little person his size. It made me so grateful for my husband and his work that is so willing to let him be at the hospital with us. I don't know how parents do it when they are the only one with their sick child (at least at our babies age it would be nearly impossible). She demands so much time while we are there, that it is physically, emotionally and mentally draining. It is is so wonderful to have another person there to pass the responsibility back and forth with. Our daughter seems to always be drawn to the other cancer patients. They all have a special bond that exists regardless of cancer type, age, gender or progression of cancer. These are very special children who have the abiblity to comfort one another in way only they can.
Thursday, December 25, 2008
Wednesday, December 24, 2008
The Dr. came in this morning, reviewed the charts, checked her out and indicated that things are looking good. We just have to wait for her fluid levels to come up some and then we get to go home. She is doing well, a little nauseated and aggitated, but over all good.
Our little one had a special visitor this time. PCMC is so good to have fun things for these kids while staying at the hospital. The therapy dog came all dressed for Christmas. She loved having him in the room. She also had Santa visit, only she fell asleep and wasn't awake to actually see him.
Sunday, December 21, 2008
So, my sister-in law called me the other day to see how we were all doing. After I was done telling her that we were doing fine she said "How come you have to be so tough all of the time?". This is for all of you that aren't with us at night after our children have gone to bed, or at church, or when we are alone driving in the car. We have our breakdowns just like everyone does when going through something like this. This has been by far the hardest thing I have ever had to go through in my life time. I have found the best way for me to deal with the stresses and pressures put on me during this time is to focus on the positive things happening during this trial. It seems when I focus on the difficulties of cancer being apart of our lives that I am brought down to a low that is very difficult for me to come out of on my own. So for me to deal with this situation I have found that if I think and dwell on the positives then I truly feel good with the way things are turning out and progressing with her cancer and its effects on our whole family. I have said this before, that her tumor/cancer "is what it is" and no matter how much I cry (and I do occasionally) and no matter how much I wish this wasn't happening and no matter how much I want it all to just go away, nothing is going to change where we are right now. I have a daughter with a cancerous tumor. I have three other children that are at home suffering in their own way with the changes that have been brought into their lives. I have a wonderful marriage with a husband that struggles occasionally with what we are facing, just like I do. What keeps us going and doing the things we need to is the acceptance of our circumstances, our faith in our Heavenly Father's watchful and caring hand, and our positive outlook on all that is given to us. We are so grateful to everyone that has been supporting us through this unfamiliar path we are on. THANK YOU SO MUCH!
Friday, December 19, 2008
Tuesday, December 16, 2008
Our baby has come down with a cold! It is just that right now and hasn't turned into a secondary infection.....yet. Her dad and I both said last night that we didn't have a good feeling about this cold. Hopefully that is just us worrying and that it is not a hunch. She hasn't fevered yet, but she did sound worse last night (stuffier) I have never watched a cold so closely before. I worry about every sneeze, cough, sniffle, etc. Her appetite is down even from her after chemotherapy normal, but she seems to be alright in spite of these symptoms. She is one tough cookie. We will have to keep watching for any other signs that her cold has turned into something else. We hope she will follow her past trend and dodge another bullet. We will keep you posted if anything else develops.
Friday, December 12, 2008
We spent the day up at the hospital. When our daughters blood counts came back yesterday her hematicrit was down to 20 which means she needed to get a blood transfusion. Today we took her to have her transfusion. She did just fine with the blood she recieved and she should have more energy and feel better tomorrow (actually she looked quite good shortly after she was done with the transfusion). She has had two transfusions prior to this one. Both of the others were done while we were in the hospital for her treatments. It is nice to have it done when we are already up at the hospital, instead of coming back up a separate time. She was also visited by Kyle Korvor from the Utah Jazz and he signed a little Jazz basketball for her (I think her brother will like the basketball better than her though). I think it would have been more exciting for her if she was older. She just couldn't figure out why all of those people were staring at her. She didn't even want to touch the basketball until long after they left. Oh, well it was a nice thought (and good PR for the Jazz). I was surprised to see how long it took to have her transfusion done today. I think part of the reason it took so long, was that her baroviac line is not wanting to draw back blood again. The nurse tried to draw back blood for twenty minutes (which really wasn't that long considering our home healthcare nurse and I tried for one hour yesterday. Everyone that tries to flush the line (push fluids through it) says that her line flushes beautifully, and then when they try to draw back they can't figure out what is wrong with it. The nurse TPAed her line which is putting a declotting agent in her line, then it sat in her line for 1 hour and 45 min. Then she tried to draw back a clot, but nothing came back (There was No Clot). Her Oncologists decided it isn't worth trying to replace it right now. So we will fight with her broviac for a little longer. If it continues to have problems drawing back they will start doing blood draws with a needle. I hope the line decides to work for us again.We are so grateful for all of the many people who are able and willing to give blood for those who need it.
Wednesday, December 10, 2008
We have been thinking for awhile about all of the many little miracles we have seen during the last couple of months. We didn't want to type about this until we had received some concrete news about our daughters tumor, but we have decided that whatever the out come of this cancer diagnosis we can't discount all of the small miracles we have seen throughout this process this far. We wouldn't want to forget these wonderful miracles and the best way to remember them is by writing it down. The tumor was caught before it had spread to other areas. The outpouring of support, compassion and encouragement we have received from family, friends, associates, neighbors and those we have never met. Our daughter has not had any fevers while in between treatments. She has dodged sickness that other family members have had (it is so hard to not spread sickness in a house full of kids). She has seemed to feel quite well during the weeks in between treatments. She hasn't had mouth sores. Her hearing is still normal. She hasn't lost much weight. She hasn't had any urgent visits to the children's hospital. Our nurse came in at the right time when she was having an allergic reaction to the etoposide. I say all of these things with the knowledge that we are not in the clear and anything can happen. We are so grateful for all of these little miracles that our family and our little girl has received. We know that she is being blessed because of the faith and prayers of everyone that hears about her. We have heard from friends and family that have run into people they don't know or only know a little that know about our little girl and her cancer. They will say, " I know about that little girl, I have heard her story, we are praying for her and her family". We are so grateful to everyone that is concerned for her, thinks about her and hopes for her full recovery, and those who pray for her. We know that she is being watched over and helped during this trying time in her life. We can't thank you all enough!!!!
Thursday, December 4, 2008
We made it through treatment number three. We are so happy to be home with our whole family again. She did really pretty good with the rest of her treatments. The new Chemo Med Etopophos seemed to agree with her system and she didn't react negatively (other than those that are common - low blood pressure, nausea). She was so cute at the hospital. She wins the hearts of every nurse, doctor, tech, house keeping, everyone that meets her. We decided to get her out of her room today before we went home, so we put on her darling little hat matching bracelet and little slippers and left the room. As we were walking she kept saying hi and waving to everyone that she saw in the ICS unit. She thought she was just the cutest little thing and it was hard to disagree with her. Everyone in the halls new she was coming because they could hear the other staffers gooing over her. We could hear the nurses saying "oh, Alyssa must be coming down the hall". She really is darling. This picture is a recreation, but you get the idea. She is very smart too. One of the nurses was changing the tubing for her IV line and the end cap on her Boroviac tube was exposed. She took one of the empty saline syringes and tried to attach it to the cap on her line. It shouldn't surprise me, that she knows what is going on. This is her life right now, she sees it all of the time. I guess I just didn't realize that she was paying such close attention. Another thing she did while we were at the hospital was that she got a hold of her throw up bowl and put it up to her mouth and started making throwing up noises into it (smart, but pretty sad that she knows what the pink kidney bean shaped bowl is for). All in all, she really seems to be doing quite well with her treatments (other than our few set backs). We found out that we may be up at the Children's hospital over Christmas if she has any set backs or if her blood counts are not up, so we are praying that she does remarkable over the next couple of weeks so that we don't have to spend Christmas at the hospital!
Tuesday, December 2, 2008
Etoposide (VP-16) that she gets really itchy. Her tongue starts to bother her and her eyes and face itch. Last time they noticed an increase in her heart rate as well. This time, after about 15minutes of having Etoposide she started rubbing her eyes and rolling her tongue like she usually does, but then she started to throw up. The lights were dim, and I was in clean up mode and my husband had throw up on him, so he was holding our baby with a blue chuck (to protect him from getting more throw up on him). I got her cleaned up the Tech came in and said I am going to get the nurse to tell her she is throwing up. Apparently it is not very common to throw up so soon after starting chemo (it usually happens a little later on). While she was out getting the nurse our baby began to get sleepy and she fell asleep. When the nurse came in she touched our daughter and said get her up on the table we have to get oxygen in her right now. My husband took her over to her bed and we realized that she was white and that her mouth was blue. The nurse got some oxygen on her and immediately turn off and disconnected the drip line full of etopiside. The tech went and brought in the nurse practicioner and the charge nurse for the night. Once everyone was in the room and the bright lights were on she started crying pretty hard and got some good oxygen in her system. She began to be more responsive and she started to pink up. She didn't need to be revived, she started breathing again on her own once we moved her over to her bed. What my husband and I didn't recognize in the dim lights of our room, was that she was not falling asleep, but that she had stopped breathing. The nurse wondered if we hadn't noticed the temperature of her skin was cold and that she was unresponsive and limp. In our defense: It is not uncommon to have her fall asleep when they give her the etoposide, The room was dim and she had a pacifier in her mouth, there was also a plastic protective cover between her and her dad. The nurses put the fear in you about getting cleaned up if you get the chemo on you (one nurse said they treat it like a hazardous waste spill), so when her diaper leaks or she throws up they make us clean her off a 2-3 times and anything she is wearing needs to be changed. We have to do the same if it gets on us, so we were focused on getting her, the room and us cleaned up. When we thought she was falling asleep it didn't seem to out of the ordinary. Now, we know what to look for if this happens again, and we will be watching more closely. All of this happened quite quickly within a total of 5 min or less. She is doing fine. Her rounds of Bleomycin and Cisplatin chemo went just fine last night. The Oncologist decided to give her a different drug called Etopophos instead. This drug does the same thing in her therapy that the etoposide does, but less people have a reaction to it. They will give it to her over several hours rather than the usual 1-1/2 hours and we will all watch her very closely to make sure that she doesn't have an allergic reaction to it. Again, thank you to everyone that keeps her in your thoughts and prayers.