Monday, December 29, 2008

These Kids Know

I was downloading all of our Christmas pictures from our camera onto our computer and came across some pictures we took of our little girl the last time we were up at the hospital. I know this picture isn't very clear, but it is the only one that I had that didn't show this little boys face. I didn't get permission to put pictures of this little boy on my blog so I didn't want his face to be showing.
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

Merry Christmas!

We are home and Christmas Morning has been wonderful. The kids are all enjoying their new presents and having a good time together. On our way home from the hospital yesterday we had a few errands to run (ie. the post office, gas station, few last minute groceries and the pharmacy) So my husband and I took turns running in to the different places while the other stayed in the car with our daughter. I had gone to Costco pharmacy to pick up her Zofran (anti-nausea medicine) on Tuesday while heading back up to the hospital, from a good nights rest at home. The Pharmacist told me that he didn't have it in, but that he would get it in by the next day. So we stopped at Costco (our last stop before getting home) and I ran in to get the prescription. When I got there they told me it didn't come in. I was sick to my stomach all we had left was enough for two more doses not even enough to get us through to Christmas Morning. The Pharmacist told me that he had called around to all the local Costco's and the Jolley Pharmacy's and none of them had it in stock. The supervisor came out to assure me that he would have it in by Friday (the day after Christmas). I told him that that would be too late I had to have it today. They then told me that they had called and left a message on our home phone that morning telling me that they couldn't get it in today. That is great, but I failed to give them my cell phone number and we were staying up at the hospital and didn't get the message. He told me that I would have to go back up the the children's hospital to get the medication. We live about 40 min. from the hospital (sometimes longer with traffic)and the last thing I wanted to do is head all the way back up. I asked if there was any other pharmacy (ie. walgreens) that would have it and he quickly let me know that this was a Children's Oncology drug and it would have to be delivered to any of the pharmacies since it is not used that often. He told me there was one other hospital that we could go to about 20 min away if we wanted him to transfer the prescription. I told him that would be great! We got in the car and I was telling my husband that we had to turn around and go to another hospital to get the Zofran. He reminded me that the Oncologist let us go home early (8 hours early)with the agreement that we would heavily hydrate our daughter with clear liquids at home and we had already been in the car an hour and a half with all of the running around, so we needed to get her back home to start her hydration period. She was a little upset and didn't want to drink anything while we were in the car, I think she wanted to be home. Just as we pulled out of the Costco parking lot she started throwing up. It got everywhere including down her shirt and all over her dressing (bandage covering her central line). When it gets really wet you have to change it to prevent infection entering her body through her line. My husband pulled over and got out of the car and I jumped from the front seat to the back all in about five seconds and we started clean up mode. I yelled at my husband to get back in the car and get us home (yes, these trips to the hospital take all of our energy out of us, even the energy that makes us nice!?!) I tried to clean her up the best I could with wipe ups and get the chemo throw up off of her, and her soiled clothing in a bag. Once we got home dad bathed her and I headed back up to the other hospital to get her prescription and then down south about 45 min. to pick up our other kids just in time to turn around and head home so that we could have a little bit of Christmas Eve together before bedtime. Once I got to the hospital I walked up to the main entrance doors (automatic doors) only to nearly run right into the glass. Apparently the doors had been having trouble opening. Luckily about one minute after getting to the doors (and trying to jump and wave around the door to make the sensor detect me) a man walked up and said "Oh, are the doors not working again? Let me get my badge and I will let you in." I finally made it to the pharmacy counter (sorry this story is getting pretty long, I have never been good at telling the short version of a story, just ask my parents!!!). When the guy checked me out I got slightly teary eyed. Silly, I know, but I have never been so excited to receive a prescription before in my life. There is nothing worse than watching your child throw up time after time after time. Zofran is my #1 favorite medicine ever! I think that the build up of tiredness, stress, etc. over the past four days of being up at the hospital did me in. I almost started crying to my Brother In-law on the phone when I let him know I would be on my way to pick up my other kids. I was so grateful to finally pull into my own garage and walk into my house knowing that all that was left was fun and relaxation for the next couple of days! What a wonderful Christmas this is!

Wednesday, December 24, 2008

We'll be home for Christmas

Last night we finished our fourth and possibly her last round of chemotherapy (tests mid January will let us know for sure). Hurray!!!! Usually it is annoying to hear the alarms of her IV drip pump go off but this time when the alarm sounded indicating the cisplatin infusion was complete we jumped for joy, let out a couple a screams, took pictures, and breathed a sigh of relief.

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

It Is What It Is

We made it to the hospital. Our little girl didn't end up having a fever with her cold, so they let us in a few days early so that we should be home for Christmas.... YEA!!!! This is our Fourth Chemo round and our last one in this group of treatments. Mid January we will come back up to do her rescanning and see how her tumor has responded to her chemotherapy. We will then have a new plan for the next couple of months (hopefully her new treatment will include regular check-ups and lab work and not more chemotherapy.....but we will see). We will have to post again to let you know how she responds to her chemo drugs this time.
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

Cross Your Fingers

We took our daughter up to the Children's Hospital today for her audiology testing and blood work. Her hearing came back within the normal range. Her really high pitch and really low pitch is down from last time it is on the border for the lowest of normal ranges, but those pitches are ones that we don't usually hear anyway so not a big deal. The audiologist was very impressed with her. She couldn't believe how well she did with her testing for how old she is, our little girl was very patient and only pulled the ear bud out twice! Way to go baby! Her blood work came back and her counts look really good (good enough to head in for her 4th chemo round this Sunday). So, we are planning to go in Sunday morning (unless her cold she has turned into a secondary infection before then and she fevers). So everyone.....cross your fingers or say a prayer. Her cold is still lingering and doesn't seem to be getting better, but she isn't fevering, which is great. It looks like we will be home for Christmas, Hooray!!! While we were in clinic waiting, the nurse brought us in a Christmas stocking full of small toys and goodies for her. The stockings were donated by one of the construction crews working on the hospital. People never cease to amaze me with their generosity. Our daughter was excited to play with the little baby doll that was in the stocking. The nurses had all those that received a stocking sign a thank you card to give back to the construction crew and as a I was thinking about what to write on the card I read some of the other comments. The kids that wrote their own thank yous touched my heart. They go through such difficult stuff while at the hospital and it is nice for them to have generous people bring a smile to their faces. There are so many good people in the world. I hope that in the future I will be able to return the favor to many others that go through similar trials/sickness in their lives.

Tuesday, December 16, 2008

Tis the Season

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

Another Visit to the Hospital

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

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

A Little Scare

Our babies counts were up, and we made it to the hospital on Monday. We found out that our daughter is allergic to one of the chemo drugs that they have been giving her. The Doctor said that it isn't uncommon for people to build up an allergy over time. We noticed that when she has been given 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.

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.

Friday, October 31, 2008

The Cutest Little Bald Baby Ever

Some of you that have had the chance to talk with me over the last 4 days have heard me fretting over the fact that every time I would touch my babies hair I would end up with a handful of it hanging from my fingers. I have worried about her loosing her hair from day one of finding out that she would be undergoing chemotherapy. I decided that whenever I think of a cancer patients I think of their bald head. Loosing your hair solidifies that you are sick. She has seemed so okay lately and I wasn't ready for her to look sick yet. Well ,four days ago I was doing some work on my computer and my daughter was sitting on the floor next to me playing when I realized that her hand was full of hair. At first I thought "ouch that had to hurt, why isn't she crying" then I started running my fingers through her hair and realized that she hadn't pulled it out, it had just come out on its own. It made me sick to my stomach to watch her pull hair out every time she touched her hair. My husband and I had talked about her loosing her hair and I decided that I was going to let her keep it as long as it still looked okay and he decided that we would shave it before it started looking gross. So we agreed that she could hang on to it for a little while. The next day when she woke up she had hair everywhere including a chunk in her crib. Throughout the day it became easier and easier to see the hair all over her and all over everything she played with. That night I kept having bad dreams about me loosing all of my hair and her loosing all of her hair and I just didn't sleep well. In fact in the middle of the night (I don't think that I was completely awake) I began praying that when we woke up she would have a large bald spot on her head and I would really have no choice but to shave it. The next morning I woke up to her choking on her own hair. Her hair was everywhere. She was in our bed and that meant that the hair was all over me and my husband, our baby and her big brother. Her dad got the vacuum out and we all got vacuumed. Her hair much to my disappointment didn't have a large bald spot, but was falling out very quickly. I still wasn't completely convinced that I was ready to shave it yet though. All day long I found big clumps of hair on the floor, in her crib, on her toys and even in her food and mouth (yuck). At about 3:00pm I called my husband and told him it was time to shave her head. I can't even imagine having an older child or an adult loosing their hair, it is amazing to she how much hair she actually had on our head. I got a little bit of hair on the top/back of her head and put it in an elastic and was going to cut it so that we could save some of her hair to see how her hair changed after chemo. When I was finishing wrapping the elastic around her hair she leaned forward and the whole clump just came out. By the time her dad came home from work her hair had started looking like an old balding man. I was so worried about actually shaving it off, but when it came down to it, I think it was harder to watch it fall out than it was to shave it. Everyone wanted to be a part of her head shaving, so my husband and I took turns shaving it and the kids watched and giggled. She looks darling even when she is bald. Once she was done we gave her a sponge bath and got her dolled up for her first bald baby photo shoot. It was late and we decided it was time for the other kids to go to bed while I vacuumed the carpet to clean up all of the hair she lost during the day. My three year old came running down the stairs and he said "Mom I want my hair cut like sisters" I said you do? Go and tell you dad, so he did, he said "Dad I want my hair all gone like sisters". We didn't shave it that night, but he still wanted it in the morning so we decided that we would shave his too. What a special show of support from our little three year old! Our other kids all think it is quite funny to run up to her and rub her bald head and then run off again. I have to agree it is fun to touch and kiss! I think that I am a lot stronger with all of these things than I give myself credit for.