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.