Saturday, November 29, 2008

Minor Set Back

We had our first minor set back. We were scheduled to go into the hospital on Friday, but our daughters blood counts came back too low. We are going to have home health come out and draw her blood again on Sunday and then on Monday morning the children's hospital will call us to let us know whether we will be admitted on Monday or not. It takes a bit of mental preparation to gear up to go in for the chemotherapy treatments, and I have to say that I was ready to go. Oh well, I guess we will have to gear ourselves up again for Monday. Our baby acts just fine, and our Care Manager at the hospital with the oncology department wasn't sure why her ANC count was low. When you go in for chemotherapy all of your blood counts take a dive from healthy levels, then they come back up, but they don't usually bob up and down. When her different counts are low you notice different signs such as easy bruising, weakness, pale skin, etc., but she acts and looks just fine. Her ANC or absolute neutrophil count is what is down. That is the part of your blood that helps to fight off infection. We usually give her neupogen shots daily to help boost her ANC, but this time shortly after starting her on neupogen shots her counts went, up so our Oncology Doctor decided to take her off of the neupogen. It is common after coming off of the neupogen to have your ANC drop a little bit before it bounces back to normal. We had been off of the neupogen for about a week and a half and her blood counts had been rising and then all of the sudden the ANC dropped again. Her Platelets were above the healthy normal range. WEIRD (well at least to me, I guess maybe this happens and it isn't as weird as I think it is, but I wonder what causes this?) I did call up to the oncology clinic to find out why this would happen, but they said we don't know why her blood count has changed. So I guess I will have to talk to the Doctor on Monday while we are inpatient at the hospital. We will be crossing our fingers that we will be admitted on Monday. We are definitely ready to mark off our third treatment and look forward to finishing our fourth so that we can finally do our scans again and see what is happening with her tumor.

Sunday, November 23, 2008

Things To Be Grateful For...

I have been thinking a lot lately about the many things that my family has to be grateful for. I've decided to list a few of them, in no particular order. I am doing this partly because of the upcoming Thanksgiving Holiday, and partly because of the talks shared during Sacrament Meeting today. It is so important that we recognize all of the blessing that we have in our lives. I believe that positive thinking is powerful and if we dwell on the positives that we can be given renewed strength during our trials. So here we go:

1. We found our babies cancer at the time that we did, and that it had not spread.

2. We have a smart Family Doctor who was prompted to send us up to the Children's Hospital for further testing right away, rather than waiting to see what would happen with her bleeding.

3. Her type of cancer is quite treatable.

4. Insurance, where would we be without our insurance??? I am so glad that my husbands work has such a good insurance policy.

5. My husbands work (they have been so great and so supportive!!!!!) THANK YOU

6. Anti nausea medicine, I am so glad that there is modern medicine to help ease our pain and discomfort (our daughters to be specific).

7. Family support, both our immediate and extended families have been willing to drop almost anything to help us out when we need it. It is wonderful to know that we have such a great support system of people who love us and care about us.

8. Freezer meals, my family has appreciated all of the freezer meals that have been brought in to us. It is so nice to be able to pull an already prepared meal out of the freezer on those days that it has been to difficult to get a meal prepared. It is also wonderful to have meals for people to pull out of our freezer on the days that we have Doctor appointments or hospital stays (planned and unexpected).

9. Great friends and neighbors, our hearts have been touched by the out pouring of love that we have felt from our wonderful neighbors and friends (both old and new).

10. Hats, I love them! I can't get enough of them our little girl looks darling in them, and ....they keep her cute bald head warm.

11. Helpful Doctors and Nurses. The staff at the children's hospital have been wonderful to work with (most of them). We are so grateful for their knowledge in the medical field.

12. Home Health Care (what a blessing). Our nurse has been great, I have even found myself chatting with her on occasion about some of my concerns with my baby (not necessarily medical related), so I am thankful for her.

13. Medical Technology (scans, tubes, medicine etc.)Yes even Chemotherapy!

14. Prayer, we know that she is being prayed for all over the US and also in other countries in the world. She is a very lucky girl to have so many people concerned for her well being.

15. Our knowledge of our Heavenly Fathers love for us always, and under every circumstance we find ourselves in.

16. Pacifiers, our baby never wanted a pacifier the first year of her life. From the day her testing began she has decided that she loved pacifiers. I brought it more for a toy than anything, but I have appreciated her taking it during some of her restless/irritable times.

17. Pictures there is nothing in the world that can capture a moment in time better than a photograph. Not even our memory can hang on to an image and keep it like a photograph can. It seems as though each picture captures a time, a place, a thought, a feeling and occasionally even a smell that brings back to our conscious mind a memory from our past.

18. The internet/Skype, it enables us to keep in contact with our family that lives out of the country and they are able to see our children at that moment, live through our computer.

19. Broviac Tubes, I would be a wreck having to watch her get poked every time they had to draw labs or give medication. Her (almost) daily shots in her thigh are enough for me.

20. My house, there is nothing better than having our family together in our home.

21. Not having to stay at the hospital for longer than four days at a time. I am so grateful to be able to bring my daughter home after her treatment sessions. As grateful as we are to have the constant watch and care for our daughter that we do in the hospital, we would much rather be in our own home, living in our (somewhat) normal circumstances.

22. My other children and their love and support they show for their baby sister. I am so proud of how well each one of them has dealt with this new change in their lives.

23. That our bed is big enough to accommodate our baby and her new dislike for sleeping in her own crib (well really her dislike for sleeping at all)

24. People that donate blood

25. Cancer survivors, and their stories

26. That our baby is only one and won't remember a lot of what is happening to her.

27. That our baby is only one and her body is so resilient, I can't believe how well her body can bounce back from all that is happening to it right now.

28. That she dodged a bullet this last week (our son got strep throat and she drank from the same cup as him and ate off of a treat that he had eaten off and then left on the ground all during the time he was fevering and before we know what he had).

29. My relationship with my husband and the strength this trial has given to us. I loved him before, but I have watch our love and respect for one another grow during the last couple of months. I am so grateful for the strength his is to our family. He is a wonderful Husband and Father!!!
30. That my baby is alive and relatively well, despite any lasting side effects of chemotherapy and possible surgeries.

This list could go on, but I will spare my hands from getting to tired of typing and leave my list at that for now. In spite of the hardships associated with having cancer be apart of our lives, we really are very blessed. We thank our Father in Heaven for giving us the ability to see the many blessing that are being poured out to our whole family during this time.

Monday, November 17, 2008

Anticancer: A New Way of Life

A friend of mine told me about this book, and let me borrow a copy, it is called "Anticancer: A new Way of Life." by Dr. David Servan-Schreiber. I wasn't sure what I would think about this book, but decided to open it up and read it anyway. I haven't finished it yet, and normally I don't recommend books without finishing reading them, but I think this is one of those books that everyone should read. The Dr. that wrote the book was diagnosed with a brain tumor and through his experience and research he tells of the life style changes he made to help with his cancer. One thing that I like about this book is that he never tells you that you should avoid modern medicine, instead he encourages following the Doctors medical advice, but also improving your odds by having a lifestyle change. What he recommends are common sense changes really. For example: Exercise 30 min six days a week, Expose yourself to sunlight 20 minutes each day (vitamin D), Practice a method of relaxation (manage your stress/anger/depression), Acceptance of yourself/resolve past issues, Share your emotions with others (don't deal with everything alone/have a good support system), Enjoy life (laugh), Eat a healthy balanced diet (we all know what this means), Live in a clean environment (no smoke or other harmful pollutants). His first few sentences in his book say," Cancer lies dormant in all of us. Like all living organisms, our bodies are making defective cells all the time. That's how tumors are born. but our bodies are also equipped with a number of mechanisms that detect and keep such cells in check." He says that some peoples immune fighting systems don't work as well as others and that is where he begins to talk about other things we can do to improve our odds when fighting these defective cells. As I have been reading this book I have decided that why not try to do everything within my power to help our baby get better, and to keep her healthy (along with the rest of my family). He backs up his findings with different research studies that have been done all over the world. He also talks about his personal experiences in dealing with the prognosis of a serious illness and dealing with all aspects of it. This part is probably more interesting to those people who have gone or who are going through this type of experience. The idea of a new way of life, a healthier way of life is something that everyone can benefit from.

Friday, November 14, 2008

Life Is Good

Our baby is doing good. I was expecting this first week being home from the hospital to be the same as last time. Someone needed to be right with her or she would tip right over, she was also out of it and more fussy than normal. This time was much better. She has hardly been groggy at all. I think that she had a lot less medication in her this time when we brought her home. She seems to be doing really well. Her blood counts are all up and looking great, in fact her ANC (absolute neutrophil count- which helps to fight off infection) are high enough that for now we can stop giving her the neupogen shots that we usually give her every night, YEA!!! Her levels will probably drop over the next week though and we may need to give them to her again before her next treatment, but that is okay. Her Broviac Line is still causing some problems when we try to draw back blood, but our home health care nurse is getting pretty good at figuring out what to do to get it to work. We have found that it works much quicker if we have her laying down either on her back or stomach, but even with that it is no guarantee that it will draw blood right away. It is always interesting especially those mornings when she comes and I haven't had the chance to brush my teeth yet and I end up needing to sing over and over again, "Itsy Bitsy Spider" with actions all while holding my daughters arms and being only about a foot away from the nurses face. Maybe on those days I should get up a few minutes earlier to brush my teeth, so that the home health care nurse doesn't pass out on me! My little girl is quite the trooper, I wonder if her body will just continue to get more adjusted to its new normal and the changes in her will have less effect on her. She is still struggling with finding foods that taste good to her, but when we find something we let her eat it until she is full. We also just follow her around with a sippy cup offering her drinks throughout the day, our hope is that she will get enough to drink this way. She loves spending time with her brother and sisters and they can always make her smile and laugh. Sometimes I listen to her playing with her siblings and forget that she has cancer, and has just undergone chemotherapy... until I look over and see her darling little bald head, then I remember! I guess my point is, she is doing much better than I had expected coming home this time, WHAT A BLESSING. I will keep everyone updated with her blood counts over the next few weeks, and if things continue to go as well as they are we won't need to go the hospital until her next round of treatment, which will happen after Thanksgiving.

Sunday, November 9, 2008

We Get To Come Home

So we finally get to come home. She did fairly well considering all that happens at the hospital. Her hematicrit had been dropping since starting the chemo on Thursday (and will continue to drop for a couple of weeks), so they gave her a blood transfusion again before going home. That way we won't have to turn right around and come back up when her hematicrit gets too low. She only threw up 4 times this go around. That was quite the improvement over last times every 15 minutes for three hours straight. She seemed to be in a better mood this time as well. She obviously wasn't her normal self, but she only threw a few hitting, pinching, and biting fits this time. She also was able to have a little bit of fun in between her chemo treatments. She found that she really enjoys playing in her crib and throwing her toys out over the top of the railing. Normally this would not be a very fun game for Mom and Dad, but in this situation anything that entertains her and makes her happy is worth it! A neighbor in our ward brought us some little slippers for our baby. What a great idea. We were able to let her walk around with us holding her hands throughout the ICS unit. She loved being able to walk on the ground. She was groggy from some of the medication she was on, but as long as we held her hands she did great. I am sure every time we come we will discover new ways to make life at the hospital a little easier. Yesterday my husband brought our three other children up to the hospital. We gave them a tour of our daughters room, the ICS until, the fourth floor of the hospital (where we go for monitoring and some testing in between chemo treatments) and we even found the outpatient surgery floor where our son was earlier this year during a lymph node removal (which thankfully came back negative for cancer). Then we headed down to the cafeteria where they each picked out their lunch and we brought it back up to sisters room and ate lunch and watched a movie with her. The kids enjoyed coming to visit their baby and getting to see what sister does here at the hospital. I think they weren't as impressed as they thought they would be, but they did enjoy lunch and a movie together! I was able to sleep at home last night while dad stayed at the hospital. There is nothing like your own bed! I told my other kids that they had to come into my bed first thing in the morning to snuggle with me, they were so excited (I am always telling them to go back to their own beds when they come into our room). I was in heaven snuggling with my kids in my own home. My Mother-In-Laws sister came to stay in our home with our big kids while we were in the hospital. I just keep thinking how wonderful her sisters all are (they remind me of my sisters) They are willing to jump in to fill in where she can't (she is out of the country for the next 14 months). My mother in law is very lucky to have such a wonderful relationship with her sisters. Like I said before, they remind me a lot of my sisters and I feel so blessed to have the ones that I have. I came back to the hospital after helping get my kids ready for church. I made it back just in time to attend the LDS meeting that they hold here in the hospital every Sunday. They only do a Sacrament meeting, which consists of; an opening song, prayer, song, Sacrament, one talk and a closing prayer. I came in about 5 min. late, and sat down and immediately I started to look around. I saw several little kids with their parents, some attached to monitors, some with tubes coming from their noses, others with pic lines or central lines, and I couldn't help myself. . . the tears just came. I tried to fight back the tears, but I couldn't. I wasn't crying about my baby in particular, but about all of these little sick children here in the hospital. I had a hard time trying to make sense of all of it. Why does our Father in Heaven allow little children to get so sick, and sometimes allows them to pass on way before they have had the opportunity to experience life. Now let me say, that I know that our Father in Heaven has a plan for all of us, and no two people have the same path in this life. I know that we all have to go through trials and struggles of all kinds while we are here on this earth. I also know that the only way to truly learn something is through experiencing it ourselves. We must be perfected in order to live Eternally with our Father in Heaven and without opposition we wouldn't be able to grow and become more like Him. That doesn't mean that we will all have the exact same struggles, there is more than one experience we can go through and still learn the same lesson. With that said, then I might ask again, why does our Father in Heaven allow bad things to happen to little children? I know that I have just answered this question, but I still am conflicted about it. I do know that there is a reason and I don't doubt anything that my Heavenly Father does, but I don't always understand it, which is why I must find out for myself through scripture study, fasting and ultimately getting down on my knees and praying for comfort and peace concerning this. What I can say is that I have felt that our family including our baby agreed to go through this trial before we came to earth (to what extent, I don't know) but, I know that we are being refined because of this experience. I know that I will at one point in my life be able to look back and say, "I understand. Look at what we learned from that experience. Look how our family grew because of that struggle." I don't know when that day will come, I don't know if it will be in this life, but I know I will be a better more humble person because of this experience.

Thursday, November 6, 2008

We Are Back Again

We are back at the children's hospital for our daughters second round of chemotherapy. Once we checked in and got our new room for the next four days we started settling in. We set our daughter in the crib to let her run around for a minute while we put our things up, she was all smiles. The nurses and her Dr. all came in to check on us and she kept playing peek-a-boo with them and giggling. Yes, this is yet another blessing of finding out about her cancer when she was so little. I really don't think she remembers what happened to her the last time she was hear (too bad... I do remember). I put off packing and getting ready to come until right before we had to leave. Whenever I have to do something I really don't want to I dread it, and think about it, and put it off until I have no other choice but to get it done. I suppose that I would save myself some agony by getting in and getting it done early so that I don't have to keep thinking about it. Her first day of chemo actually didn't start until 10:00pm so we did it throughout the night. I almost think this may be a good thing. She slept through most of it. Mom and Dad didn't sleep much though. Her heart rate got up pretty high and her blood pressure was low, so they monitored her closely for awhile. By morning everything was back to normal. Today she has only thrown up once and so we are hoping that this will be the end of her throwing up! She started day two the same as last time, she isn't quite as irritated, but she is so tired she doesn't know what to do with herself. She is having a hard time eating anything, she tries it, puts it in her mouth and then she spits it right back out. She will drink a few swallow of water here and there, but not much of anything else. It is a good thing she is on the IV treatments. She started with a fever early this morning about 4:00am and she keeps getting gradually hotter. Now that her labs are done they will be giving her Tylenol to try to get her fever down. The Bleomycin they give her can cause her to fever, but they are going to check to make sure she isn't coming down with anything. We are grateful to know what to expect this time, it is much easier to handle some of the tougher things knowing that we have done it before. We are still trying to figure out what works best for her, but we are eliminating a lot of things that don't work for her, so it can only get better from her on out, right?!?! Thank you for your continued thoughts and prayers, we definitely can tell that we are being blessed from them.

Monday, November 3, 2008

Hawaii Bound, Or Not.......

My husband and I were supposed to be in Hawaii right now, laying on the beach and eating fresh pineapple. We have been planning a trip to Kauai for our 10th anniversary, the plane tickets were bought, the hotel reservations were booked and we even had our itinerary planned. I guess nothing is ever for sure. We are both a little bummed, but luckily we were able to get a flight voucher for the amount of our tickets to use anytime within the next year. As far as the rest of the plans my husbands two brothers and their wives were going too and yes, they are there right now. They promised to have a great time, eat some fresh pineapple, and get some good old sunshine while relaxing on the beach for us. My husband taught me a great lesson during the first few years of our marriage. We used to live about three and a half hours south of where we grew up (and where our families still lived), so we would travel back and forth often. The road in between was often times bogged down with traffic and since it was out in the middle of no where there was no other way to get home unless we stayed on the freeway. I used to get extremely irritated with getting stuck on the freeway with no possibility to get off for miles and no other roads to take to get around. My husband would ask me, why are you so upset? Is there anything you can do about the traffic? Can you change the situation in anyway? Of course my answer was no, so he would then say, don't get so worked up about it, it will only make you more miserable, just make the best of the situation. It took me some practice, but I finally figured out ways to pass the time that we were stuck on the freeway. It made the situation more bearable. Now, we could be pretty upset about missing out on our trip, but instead this is what we have decided to do to make the best of this situation: my husband bought everything he needed to make us special tropical smoothies (including a slice of fresh pineapple hanging of the top of the cup), this week we are having pulled pork for dinner and we are trying to talk our kids into performing the "hooki lau" (Hawaiian song and dance) for us after we eat, and I think we might even pull out the tanning lotion just so we can fake the suntan at the beach. We would rather be in Hawaii than at the hospital doing our next round of chemo, but....... We will make the best of it. We promised each other that once we are through all of this with our baby and her treatments we are going to take our trip to Hawaii.