HOPE

"There is no medicine like hope, no incentive so great, and no tonic so powerful as the expectation of something tomorrow."
- Orison Swett Marde

Raylee is now a HOPE kid and Jorja is a HOPE sibling. Please check out this amazing program on www.hopekids.org. This is an organization found in 4 states Utah, Texas, Minnesota, and Arizona.

A while ago when Raylee was feeling okay we were able to see the new Cars 2 movie with the HopeKids--when they go to movies the movie is called a HopeFlick. Recently Jorja was able to go the Planetarium and watch a video called Attack of the Space Pirates. We are very excited to be able to be part of this program. All family members are given a HopeKids tee shirt. The front has the HopeKids logo and the back says--Got Hope?

"Why HopeKids? Because it is necessary. There is a need to keep kids focused and thinking about the future and looking forward to the future. The more positive their attitude, the better their chance of recovery."
- Tom Lehman, HopeKids Honorary National Chairperson

Preliminary Report-Neuroblastoma still in Tumor :(

Raylee is moving forward with recovering from surgery. The afternoon after surgery they moved her from PICU to the CSU (Children's Surgicial Unit). She was doing super and the charge nurse in PICU said they love it when kids have a short stay in PICU. In CSU we have moved rooms 3 different times. The first time was because the patient next to use had a weird bacterial thing going on. The second time was because they had sent 15 kids home from CSU in one day and they closed the pod we were in, in order to keep the nurses close to the patients they moved them closer together. I insisted we were not by the child with the weird bacterial thing because of Raylee's low immune system. They told us they would give us a really nice, big, and newer room by the chidren who are recovering from heart surgery. They said this pod has no kids with any infections or bacterial issues. The room is one of the best we have had. Raylee has been admitted 5 times now since the end of May, we have stayed on every floor and in almost every unit now....except the infant and newborn units of course. We are happy we weren't placed in the ICS unit (Immunocompromised Services) this time, as it really does feel like you are in lock down there.

Yesterday they removed her IV from her hand and began using her central line. They also removed her cathedar and epidural. She also was able to begin eating. Her diet so far has consisted of Gold Fish crackers, Oreos, and chocolate milk. Her surgeon came to visit her and brought his children to meet her. It was really awesome. Raylee looks away when he enters her room and she will not talk to him. (She is this way with all the staff here and gets upset when anyone with scrubs on enters the room--even the housekeepers because they wear scrubs.) Eventually as she gets older I am sure she will appreciate what he has done for her. He is an amazing surgeon! We couldn't be happier with the results of the surgery! The surgeon himself said it went better then he could have imagined!

The surgeon had received a preliminary report from Pathology and the tumor did show neuroblastoma cells. This means the Chemo she received did not kill all the cancer cells. We were hoping it did since the tumor sample reviewed during surgery (frozen sample) showed no neuroblastoma. Since there is neuroblastoma in the tumor still....this could result in at least 2 more rounds of post surgery Chemo. The surgeon hopes since he did remove all of the tumor that she does not need any Chemo--this is what we are hoping too. This is up to Oncology to decide however. We will meet with them soon to know what the next step in Raylee's treatment plan will be. At least whatever it is, it will be so much easier to deal with than the thought of her still having that tumor inside her. I really hate that thing as it was trying to kill my baby!

Last night Raylee experienced difficult going potty. Her bladder has been stretched and is enlarged. She will have an appointment with Urology in a few days. Right now she isn't able to go on her own and they had to give her another cathedar. I feel really bad for her and hope this heals. She also vomitted :( and no one knew why, maybe she ate too much. She wanted pancakes and sausage so we ordered pancakes and sausage...she had three small bites of pancakes and a few bites of sausage. The surgerical team who examined her this morning said during surgery her bladder was moved around a lot to resect the tumor and it takes a long time for it to heal. All we can really do is wait. We hope her bladder goes back to normal and does not have permanent damage. We also hope she does not get an infection, UTI, due to having a cathedar. An infection may extend her hospital stay or, if she is released it may mean once an infection reveals itself--she is admitted again because of her low immune system--typical for oncology patients.

Raylee you are a fighter....it is so difficult to see you go through pain and take your first steps after the surgery. It is difficlt to see you miserable from being ill. But your doing this so gracefully and with so much will!! And you are doing this with strength and endurance. You are such an example for everyone to know that LIFE is precious and worth fighting for! I am starting to understand more about why Christ said to be like a little child.

Raylee is doing WELL!

Raylee had a better night then I expected last night. She is not able to eat or drink anything right now and last night she was asking for Cheerio's and Oreo's. She said she wanted to go home. She also wanted to watch a movie so we watched Toy Story 3. Since she slept better than I expected, I too slept better than expected, which is surprising because the PICU is really loud and is doesn't slow down. The PICU closes from 7 to 8 in the am and pm. This is when they have their shift change and they ask all visitors and parents to leave the unit at this time. The nurses assigned to Raylee only had her as a patient, they did not have any other patients--Raylee received extra attention and care from them. The nurses in PICU specialize in critical care. Raylee still has the epidural and receiving meds through the epidural (she will have this for a few days), she is also receiving morphine, Tylenol, Valium, and lots of fluids. She is not able to leave the PICU while she has the Arterial IV (I am not really sure what this thing is called but Raylee cannot move her hand because of it. I will post a picture of it. It is huge...in the picture posted 07/27/11 you can see the entire thing.)The Arterial IV gives the medical staff better access in monitoring her blood pressure. Last night they were able to take her off of oxygen and she is breathing excellent on her own. I am really happy she didn't need to get a colostomy bag. The surgeon said the rectum wall was stretched just like the bladder was. In the next few days Raylee will be able to eat and drink, and her ability to go potty on her own will be monitored. We are hoping the tumor did not cause permanent damage to these areas.
Her surgeon has been wonderful! He keeps saying how sweet she is and wants to keep her comfortable. He said he put her in the PICU because they monitor pain management better than any other unit. Yesterday he came and checked on Raylee several times. One of the times it was late in the evening. For Raylee being his only surgery for the day I would have thought he would have gone home earlier, but he must have worked a 12 hour day.
Jerry and I will take turns with Raylee and Jorja duing the next week while Raylee is in the hospital. Jorja is a really good kid. She has nights when she struggles with Raylee being gone and worries about her. Having her work with one of the Child Life Specialists has really helped her. When Raylee is in the hospital we make sure Jorja visits her sister every day. They have parent sleep rooms and shower rooms in the PICU but we are happy we can shower at home since we live close enough. Only one parent is allowed to stay in the room with the child. There are parents here from all over the US even some from other countries and one is with the child and the other in one of the sleep rooms. I can't tell you enough how grateful I am to live close to this hospital.
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Raylee's oncologist came to see her today and was really happy the surgery went well. She said she was really worried about it and had to come see Raylee first thing this morning. She said she was out of the hospital yesterday but the surgeon called her and she just couldn't wait to tell us how happy she was. She said it takes Pathology about 1 week to have the final results about the tumor. They looked at frozen samples from the surgery and said they couldn't see any neuroblastoma in those....YIPPEE!! However, they will look at everypart of the tumor not just samples. They basically cut the tumor all up and make slides out of all of it---they have to let it sit in a certain type of dye for a few days and that is why it takes at least 1 week. She said they will have some preliminary results for us in 48 hours but it is best to wait for the final results. The oncologist said most kids in the intermediate stage "Stage 3" receive Chemo post surgery. So there is that chance Raylee will need Chemo again. She also said most kids in Stage 3 receive have 8 rounds of Chemo all together. No one wants her to have it again, not even the oncologist. However she said she would never just say 'no' to more Chemo if it will put Raylee at risk in the future. Which we totally understand...we never want this to come back. Once Raylee is cleared from cancer she will have CT scans every 3 months.
We have felt extremely blessed through this process, although some days are more difficult than others and some days I do get mad at God for doing this. These feelings are all normal. I don't stay mad for a long time as I know this is all part of the life lessons we need to be molded into better people. I am extremely blessed to have amazing friends and family. This has been an eye opener for us....I never knew so many people loved or cared about us. I never knew I knew so many people!!! We love you all....and pray you and your families are well....and pray that Heavenly Father will bless you as He has blessed us for the opportunity to rub shoulders with you and that He opens the windows of Heaven for you.....I understand so much better now that He made you part of our lives as a gift--to help us have strength, courage, and HOPE!

Tumor Resection 100% Successful!

We received a call early this morning explaining Raylee's surgery starts at 8:30 am and we were given the incorrect time to check in. I explained we were coming at 7:00 am for blood work as Raylee's blood needed to be matched. We were asked just to go to surgery pre-op and they would do the blood work there and then prep her for surgery. As the nurses prepared Raylee for surgery she showed off for them. She told them all about Parker the dog and howled like him (Parker is aunt Jody's dog but lives with grandma because he couldn't go to Japan with Jody's family). She also colored hers and Jerry's finger nails with a marker and the nurses just loved her and got a kick out of her. The surgeon came in our pre-op room and signed Raylee's belly....she wasn't happy about that. He said it was so the nurses knew whose patient she was. Later she showed all the nurses that he signed her belly because she was proud of it. He explained to us she would have an incision like a cesarean. He said it is easier to manage the pain with an incision that goes across instead of up and down. He also stated if he made the incision up and down it would be really high and really high. He said he was going to take his time and didn't schedule anything else for the day. He also told us a urologist would put the stints in her. I am really happy we decided not to wait for the other surgeon to come back from vacation. This one is awesome! Especially because after he was finished he came right out to tell us the entire tumor was gone--he resected all of it! He said the tumor was basically from pelvic bone to pelvic bone. He said it was more like the size of a softball instead of the size of a grapefruit. A softball is just a little bit smaller than an average size grapefruit. He was able to separate it from the arteries with no problems. He did not have to go through her bottom and he didn't have to remove any arteries or major vessels in the pelvic area. He stated her bladder was strectched by the tumor and only time will tell how the bladder will recover. Jorja wanted to know what color the tumor was; it was white and hard like scar tissue. He had to split it in several pieces to remove it and said it mostly looked like the benign cells. He said hopefully the Chemo did kill the malignant cells and that most of the tumor may be the mature benign cells. The tumor was sent to pathology for examination. I am sure Raylee will also have some scans to ensure all cancer cells are gone. He removed several lymthnoids in her pelvic area that had the cancer cells. It is such a relief to know the tumor is gone! We are so happy and hope you are as well! Raylee will be recovering for at least two weeks and will be in the hospital for at least one.
Her surgery started at 8:17 am and ended at 1:15 pm. It took 5 hours. She has an epidural for pain and will keep it for a few days. She is on oxygen and also has an arterial IV which means she had an IV that goes in an artery instead of a vain. They are only using her central line for blood draws (they kept this line in case she needs post surgery Chemo). The arterial IV has several tubes. She is now in the Pediatric Intensive Care Unit and a nurse is by her bed side monitoring her. The nurse gives her pain meds through the epidural by the push of a button.....the button is pushed frequently. It doesn't seem to be as effective as we'd like so they are beginning Morphine. Raylee is just moaning and not as comfortable as she could be. The morphine will help. She has asked for some Cheerio's and said she wanted to go home. We are so excited to take her home and share this news with everyone! The surgeon said everything went better than he ever expected--we know that is because of all the positive thoughts and prayers out there for us and RAYLEE! When the surgeon told us he removed all of the tumor we cried tears of joy!

Surgery Prep

Today Raylee is on a clear diet to help prepare her for surgery. This means she can only eat things that when they melt they are see through such as Jell-o or popsicles. This isn't going to be easy. Raylee will also have Miralax mixed in all her drinks today. Miralax is a laxitive for children that is mixed in their drinks. The surgeon said the best drink to use is gatorade because it will prevent dehydration. This is all in preparation for tomorrow's surgery. We are basically cleaning her bowels. Today I will also pack our things for the hospital. Since our last ER visit I learned to take a bag to the hospital every time we go even just for appointments. Since Raylee's illness is so unpredictable I never know when she'll be admitted. You become an expert hospital packer when your child is admitted 4 times in 2 months.
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When Raylee woke this morning her central line bandage was off. She scratches at it because the skin is irritated beneath it. She must have itched at it so much at night that it pealed away. I thought I was going to have an anxiety attack when I saw that. The home nurse had just came yesterday to change it. It is changed weekly. Luckily I had a kit at home and was able to change it. There are several steps you take to clean it. You have to wear a mask and nothing can touch the area that is not sterile. I hope she does not get an infection as it could be really dangerous. Remember the central line or broviac goes into the vessel that enters her heart! I don't know how long it was exposed. I felt so bad for her because she dislike the bandage change. It is scary and painful for her. Alcohol is rubbed on it to clean it, then a cleaning solution, then a skin protectant (that doesn't work) then the bandage, and then some little bandage strips to seal it around the tube that goes inside her chest. What a process--especially when she is screaming...I feel really bad because she was crying and wouldn't hold still and I had to yell at her to be still :( This hasn't been a good day. She has cried because she wants to eat cereal. She can't. She has cried for a Lunchable and M&Ms. Poor little thing...I can't wait for this to be over. Tomorrow is going to be a long day and the medical staff had better take the best care of her! I will pull all the strength I have left for tomorrow and be as strong for her as possible. I have such an empty feeling inside.

Consultation with the surgeon.

On Thursday I received a call from surgery to set up a consultation with the surgeon and they gave me the name of a different surgeon. I was confused because this was not the surgeon we've worked with since the end of May. It isn't the surgeon we've heard great things about like: he's ranked one of the top 4 pediatric surgeons for removing Neuroblastoma tumors in the nation, he's an expert at working with blood vessels, or, if it were my child I would want him to do the surgery. So for the last 2 months we have felt confident in Raylee's surgeon as the hospital staff raved about him. I had also researched him on-line and we felt confident about his ability and skills even though the 1st time I met him he said he wouldn't be able to remove the entire tumor. I also felt confident the Chemo would work to shrink the tumor so he could remove all of it. Hearing the news Raylee's surgeon was going on vacation for 2 weeks and that's why he wouldn't be able to do the surgery was not good news. It was upsetting to us and our confidence was gone...there always seems to be something to prevent ease. The change in surgeons wasn't surprising just really frustrating. We were also upset Raylee's oncologist didn't call us to inform us about the change in surgeons immediately, especially since we just met with her on Tuesday. Jerry called her and let her know how we felt and that we were upset. She apologized none stop for not calling us immediately and stated the new assigned surgeon was equally qualified. She stated all of them felt as if the tumor should be removed ASAP. She stated after we met with the surgeon if we didn't like him, get a good feel for him, or didn't have confidence in him she would fire him from doing the surgery and we could wait for the other one to return. The stress was overwhelming--how do you decide? Is this Heavenly Father's way of changing things because He knows who would do the best job? If something goes wrong will we blame ourselves for not waiting for the original surgeon, or, if we waited and something went wrong with the original surgeon will we blame ourselves for not allowing the new assigned surgeon to do the surgery?

We met with the new assigned surgeon on Friday. He was as young as the other and just as friendly (age 44). These surgeons are not how I expected them to be. They are not arrogant nor do they treat you as if they know more than you. He didn't treat us like he knows what's best...he sat with us, explained things, allowed us to ask all the questions we had, assured us he would take care of Raylee, and gave us his phone number....not an assistants number but his. I also researched this surgeon on-line as I have all the medical professionals working with Raylee. I want to know how much experience they have, if there's any negative information on them, what their reviews say, where they went to medical school, where the have practiced medicine, etc. I found out the new assigned surgeon has 19 years experience, the head of pediatric surgery, ranked one of the top 4 pediatric surgeons in our state, has a medical license in two states, and he works really close with our original surgeon. He assured us he has followed Raylee's treatment along with the other surgeon since Raylee was first diagnosed and they have planned to perform her surgery together. Then it just happened that when Raylee needed the surgery one of them was going on vacation.

After meeting the surgeon both Jerry and I feel confident in his expertise. After he looked at Raylee's belly his office staff came to play with her. They played with some toys and spoiled her with lollipops, stickers, and books to take home. Every where Raylee goes in the hospital the staff love her, call her a sweet angle, and load her up with all kinds of prizes, toys and treats to take home. Seems whenever we go to the hospital we leave with more and more stuff. Anyway the surgeon showed us her latest CT scan on the computer and explained the details of resecting the tumor. He has an entire day blocked off for Raylee's surgery. Depending on what he has to do to remove this blasted tumor will determine the length of the surgery. It can last 5 hours or even 8-to-12 hours. If they are not able to remove it through her lower abdomen area they will need to go through her bottom, which will take a really long time. This also means Raylee may have a colostomy bag for at least 2 months. He said resecting tumors takes time and they have to go really slowly. There will be 2 surgeons in the operating room and the other is also one of the top 4 pediatric surgeons in our state. There are 8 pediatric surgeons that are able to do this surgery and Raylee's oncologist told us she will not let 4 out of the 8 touch Raylee because they are not the best. I like her oncologist, she seems to be very protective for her patients and tells other medical staff the way it is.....she has a pull in the hospital and seems to have the ability to get her way. We are luckly Raylee is her patient.

I am terrified for this surgery. Looking at the CT scan you can see why it will be extremely complicated to resect. The surgeon said he is going in it to remove all of the tumor but if at any point during surgery Raylee's life or limbs (legs) are in jeopardy he will stop. The arteries and major vessels that go to the legs and pelvic area are side-by-side with the tumor. The tumor sits on her tail bone and if she had a rectal exam it could probably be felt. So it is on the tail bone, behind her rectum, pushing her rectum and bladder up--they say it is the size of a grapefruit. It could be growing within the rectum wall and if the rectum wall is too thin now, she will also have a colostomy bag so it can heal. Since it is a cancer that originated from neuroblasts, or baby nerve cells, there could be nerve damage to her rectum and bladder already. These things we won't know until the tumor is removed and her ability to go potty is evaluated. It sits in her pelvic outlet, picture a baby in the birth canal....that is where a lot of the tumor is. The surgeon may use the same incision from her 1st surgery which goes straight down by her belly button. He said it would be easier to go across like a cesarean incision and it would be the mother of all cesarean incisions. The original surgeon said he wouldn't be able to remove all of the tumor but this surgeon said he can as long as it doesn't jeopardize Raylee's life or her legs....I liked his optimism and confidence.

The feeling of your baby having major surgery is and empty feeling but extremely heavy at the same time. My thoughts are so chaotic right now as I have a lot of questions, fear, anxiety, doubt, all at the same time and it is hard to focus. At the same time it feels as if the earth is pulling me down and every physical movement seems to be heavy and take a lot of effort. I don't want to go in this emotionally and physically exhausted but I'm afraid its too late for that. Right now I just want Raylee and Jorja to enjoy themselves. At home this often means letting them do what they want. I hate the feeling of fear especially when it concerns my baby. She will probably have blood transfusions during the survey because she will bleed a lot; the surgeon said when they remove the tumor it will ooze. He said if they need to they can split the tumor in pieces as it isn't a tumor or cancer that is toxic to be split. She will be in ICU for the following day. I apologize for this blog being late but it took sometime for this to sink in. I still feel extremely numb and helpless. I want to be hopeful and have the faith needed to be strong....I hope my weaknesses will allow me these things.
P.S. Surgery is this coming Wednesday.

Next Step: Surgery

We are home from the CT scan and oncology appointment. We are feeling somewhat defeated and really numb to the update received. It has been a long day. We arrived to the hospital at 8:30 am and didn't get home until 4:00 pm. Anyway Raylee's oncologist, Dr. S, is pushing for surgery which we wanted but not for the reasons we wanted. The tumor is not responding to the Chemo which means it hasn't shrunk much, at least not significantly. Dr. S said it doesn't mean the Chemo didn't do anything, it just means the Chemo may have stabilized the growth of the tumor and shrunk it a little, but the cancer must not be aggressive. Chemotherapy shrinks aggressive cancer cells really quickly. If Raylee has more Chemo it still won't shrink the tumor enough to extract the tumor easily. The ideal would be that the tumor shrunk enough so the removal would be easy for the surgeon. Since that isn't happening, Chemo is canceled and a complicated surgery will take place. The surgeon may not be able to remove the entire tumor and we may need 2 rounds of post surgery Chemo and a lot more followup scans and visits then anticipated. The tumor is still pushing on Raylee's bladder causing her bladder to be squished, giving her pain, and making it difficult to go potty. The oncologist is getting concerned with the pressure that's on her bladder and removing the tumor will relieve it. Removing the tumor first was the original plan even though it was going to be difficult, but the plan changed to shrink the tumor with Chemo so the surgery wasn't so complicated. Feels like we are where we started and much progress wasn't made. I feel terrible. Raylee's surgery will be in the next week or two.

Hanging In There

This upcoming week is a big week. We will find out if Raylee's tumor shrunk enough to be removed. We are hoping for this and I know a lot of you are beside us hoping as well. We had a good weekend! Raylee has played, ate well, slept better, and even has gotten into some mischief this weekend. Today she has a slight fever which we are monitoring close. If you saw her this weekend you would see a child dancing and wanting to swing. She doesn't seem ill only when she goes potty and is in pain. Her determination radiates! I no longer see her as being stubborn....I see her as being determined. This is a much better way of describing her....and seems more positive! We are all about seeing the positive!

Our support system is very large, bigger than I ever imaged. I hope I can show you all how much I love you and appreciate all the prayers, thoughts, e-mails, texts, and love everyone has shown. I don't even know where to begin in listing everything that has been done on behalf of my children and family, or in listing everybody who has donated to Raylee's donation fund set up by her aunt Valerie or participated &/or donated in the yard/bake sale hosted by Raylee's grandma Patty and aunts Valerie and Alysia. Cousins and friends donated baked goods, flowers and bows for hair & jewelry, bikes, tvs, and all types if household items to sold. Our community together with family and friends all made personal sacrafices for Raylee. Within this, Village Inn and Nutz-4-U donated pies and gourmet nuts to be sold. D-Electric, Bleazard Drywall, S&G Cleaning Services, and the Grub Box in Ferron Utah, are also some other business contributors. Our local recreation center raised money for Raylee, which inspired one of its members to contribute to Raylee through a golf tournament he was involved in. Raylee's cousins' baseball team shaved their heads for Raylee. A lady in the small town I'm from, set up a table during a 4th a July celebration selling items to donate part of the proceeds to Raylee. Jorja has a secret summer friend who leaves a gift for her on the doorstep once a week. Raylee's cousin Jayken, and her grandpa's Brad and Loury shaved their heads.

Our ward family and neighborhood has done some amazing things inspired for Raylee. Not only have several members brought us dinner but we have received a lot of treats such as cookies. Several of the young men and their leaders have shaved their heads in honor of Raylee. The young women made pink, green, and white beaded bracelets in honor of Raylee and they wear them each Sunday. They gave me and the girls our very own bracelet. The primary made pins for Raylee that have hearts for the girls and stars for the boys, and Raylee's name is on each of them with a little pink ribbon and blue and pink sparkles--pink is Raylee's favorite color.

Our work friends and employers are amazing. I work in several offices for the state agency I work for, and have the opportunity to met and work with great people in the region which I live. One office collected money and made a huge bucket full if toys, coloring books, stuffed animals, and fun things for kids. This bucket was so big and full it took 2 people to carry it. Lots of people I work with have given the girls many gifts. One office organized a waffle breakfast to raise money for Raylee's donation. This last week I was able to go to work and see many people I haven't seen in a few months and it was amazing. Individuals hugged me, cried for me and my family, and simply expressed their wishes and heart desires for us. The love expressed by everyone is humbling...I often don't feel like a good enough person for such compassion. Jerry's employer has also been easy to work with and several of his coworkers have donated their vacation with the employer matching those hours. One of his friends he works with is in the process of organizing an archery tournament in honor of Raylee.

This blog has many followers. It blows my mind because it isn't even 2-months-old and has been viewed almost 4,000 times. It has been viewed all over the United States. We also have international viewers in Canada, Iran, Japan, Brazil, Russia, and the United Kingdom. Seems like our family has grown :) Writing in this blog isn't easy. It is time consuming and difficult to expose myself, especially after seeing the blog stats and knowing how many times and places it is being viewed. However, several people have expressed to me the blog helps them and they enjoy reading it. Some say it helps them put life in perspective. If this is the case I will continue to write. Please hope and pray with us that the next step for Raylee is surgery! Thank you for everything....like always you have been our crutch.....may God bless and keep you! You are what keeps us going!

Transfusion #2

Raylee had blood labs yesterday and earlier today oncology called and said her counts look better except the platelets. They were extremely low and she needed a platelet transfusion. I took her to the hospital to a section in oncology where outpatient services are performed. This section is called "Clinic" and patients who are not being hospitalized receive chemo and transfusions, and cancer survivors go here for followups. Raylee received her 1st platelet transfusion in clinic and the entire process took about 3 hours. While she received the transfusion she watched Toy Story 3, ate chocolate pudding, and played with a toy kitchen and dishes. She was happy the entire time. Raylee has dozens of bruises on her arms and legs from even the littlest bumps. This is because her platelets are low. When someone's platelets are low they bruise easy, can bleed easy, and even get nose bleeds. Raylee has a really big black bruise by her elbow and the nurse told me to watch it for infection; this is the worst bruise I have ever saw. She said if it gets infected we will need to bring Raylee back to he hospital. It is the size of a silver dollar and black, the center looks like a blood blister. I did not know bruises can be infected. I was also told to expect taking Raylee for red blood cell and platelet transfusions after each Chemo. One of the oncologists whom examined Raylee said the body bounces back from the 1st round of Chemo because the bone marrow bounces back quickly, but the body has a more difficult time bouncing back the 2nd time, and an even more difficult time the 3rd time and so on and so on. This wasn't good news.

I guess I have felt as if Raylee wouldn't need any transfusions. Even last week when Raylee received the blood transfusion and the nurse told me Raylee would probably need a platelet transfusion soon, I thought she wouldn't. I have realized I am in denial. One if my friends explained to me the feelings I am going through are a lot like the mourning process. You get sad, guilty, despair, anger, depression, and denial. She was right. It is true I am in denial and recognizing that is important so I can fully understand what Raylee's medical team is doing without thinking...'oh that won't happen to us.' I want to try to fully grasp what Raylee is going through to understand what her needs are. I've been in denial that Raylee wouldn't lose her hair, I didn't want her to so I thought it wouldn't happen. She lost her hair in 2 days. I thought she wouldn't need any transfusions because she is my child and I told myself her cancer isn't like other cancers, it isn't as bad and she will be better any moment. These things aren't true. Although there are many types of childhood cancers Raylee does have malignant cells and malignant cells are life threatening. Even though she doesn't have a cancer like leukemia where the treatment lasts years and years, she is still really sick inside. When she is sick I do grasp these things but when she is happy and playing I think someone is playing a horrible joke on us and experimenting on her; maybe because she seemed so healthy before the diagnosis. The reality of her cancer is more than a bad dream it is our way of life right now. I keep telling myself it could be worse....this is true....her cancer could be in stage 4, we could live hundreds of miles from the hospital, Raylee could be allergic to the Chemo meds and transfusions, the cancer could have spread to her bone marrow but it didn't, or she could have leukemia or lymphoma and the treatment could last 3 years or more.

Raylee's main oncologist examined her after the transfusion and said Raylee looks good and is doing about the best she could be. Next week Raylee's 1st CT scan after Chemotherapy started is scheduled. The oncologist will meet with the surgeon and they will decide if the next step is surgery to remove the tumor, or 2 more rounds if Chemo. We are hoping for surgery. They will have the surgery scheduled and also Chemo so either step taken is ready. We will know next week....next week can't come soon enough! I know once the tumor is removed we will still have appointments and scans for years to come, and tests when Raylee is a teenager, but those things will be so much easier than Chemo.

We Are Home!

Raylee was discharged from the Immunocompromised Services Unit (ICS) today. Last night she still had a slight fever and the nurse said she may need to stay until Friday but it was up to the oncologist. Raylee had a great night and her fever improved so the oncologist said we could go home! For the last 2 days Raylee cried that she wanted to go home but today when they said we could she said she didn't want to. She is felt well enough to realize she as a TV to herself and room service, and can eat in bed. At least we left the hospital with her enjoying it.

Her blood and urine cultures came back negative meaning there were no bacteria growing. Raylee was also diagnosed with neutropenia which is when the neutrophils (most important white blood cells) are extremely low and the ability to fight infections is gone. This means Raylee is still considered immunocompromised and will still receive antibiotics intravenously through her central line or Broviac. She will receive this 3 times a day.....and I will be the one giving them to her. I was nervous at first but a nurse showed me how to do it and it really isn't difficult. I feel like a pro! If she needs more rounds of Chemo we are requesting intravenous antinausea meds. I was nervous to have those before but since I'm a pro now it would make this experience a little easier and a little more bearable. Just knowing how easy it is to give an intravenous med gives us so much hope! I feel like I am in nursing school; because I am learning so much about the body and how to do some medical techniques. I took Biology in college and it was extremely interesting but when it came down to it I didn't have the stomach for it. I never would have imagined I would be able to give meds through a type of IV line that goes to my little baby's heart. Even staying in the hospital has been a huge step for me. Before, hospitals would make me queezy just stepping foot in them! It's the weird smell and knowing there are sick people all over, germs, blood, and all the yucky stuff--just makes me nauseous. However now....I still feel like there's germs everywhere in the hospital and I wash and sanitize my hands like a paranoid person, but I don't look at the patients as being ill--maybe because they are all children--now I see them as the sweetest little kids who are incredibly strong and courageous! They are true fighters who have a level of endurance and coping that many adults lack.

Since Raylee's immune system is non-existant right now, we are asking that no one visits her. We are so sorry about this....please know we love you and you are more than welcome to visit when she is feeling better. This is really hard on her because she is really out going and loves people. She misses her little friends at church and always asks to go, she just loves that nursery! When one of us goes somewhere she asks if she can go...and is saddened when she is told 'not this time' over and over. We explain to her why she can't leave. To make up for our lack of play, we are asking you to play extra hard for us this summer and enjoy it like no other!

Transfusion #1 (Hopefully the only one!)

Prior to a blood transfusion the parent signs a document titled "Consent To Blood Product Transfusion." Within this document it reads...."My doctor or licensed independent practitioner has described the risks associated with blood transfusions to me. These include hepatitis, AIDS, and other potential reactions. I hereby accept the risk of substantial and serious harm, if any, in hopes of obtaining desired beneficial results of the blood transfusion(s)."

This sounds really scary...but when your baby isn't feeling well and giving her super clean blood that has been tested and tested is an option-and possibly the only option, the benefits definatly out weigh the potential risks. It took 2 hours to give Raylee the red blood cell transfusion. Seems like several of the nurses basically stayed in the room with us due to the need to observe and evaluate Raylee on a consistent basis. After the transfusion she received more and.more fluids. Throughout the day she was given bladder relaxer medicine and pain killer to help her potty...because she is receiving so manyu fluids her bladder fills up quickly making it difficult to potty since the tumor pushes on the bladder.....poor little girl; I feel so bad for her. She has also received Tylenol for her fever which is starting to go down and her heart rate has already improved with the new blood cells. Raylee is extremely exhausted and slept most the day. The nurses covered the bag full of blood and the tubes with blankets and sheets because I didn't want to see it due to a weakness I have; when I see blood I get queezy. I thought I would be over this weakness by now after seeing Raylee's blood drawn for labs so many times--but the blood for the transfusion was a lot more blood then a test tube full. Today was a long day, actually the last 2 weeks feel like one big long day as they all blur together. We are hoping Raylee feels well enough to come home tomorrow!

ER Visit #3--Hospital Admittance #4

So here we are.....back in the hospital. Yesterday afternoon Raylee started getting a fever. For cancer kids a fever at 100 is a concern and monitored closely....a fever at 101 is a hospital visit. Late afternoon, Raylee's fever rose to 101.4 and oncology instructed us to take her to the ER. When we arrived to the ER they put us in a triage room away from the public, then they evaluated her quickly, pumped antibiotics in her and took blood for labs. The labs came back with a white blood count of .3 which is extremely low. Within the white blood cells there are cells called neutrophil which are described as superior white cells and are extremely important to the ability to fight infections. Raylee's absolute neutrophil count, or ANC, was so low they weren't able to get a count off of it. This means Raylee's ability to fight any infections is gone. She is now resting in "lock down"......it's not really lock down; that's just what I call it. We are in the Immunocompromised Services Unit, or ICS, where they are monitoring her closer then they ever have. One of her oncologist suggested giving her a blood transfusion for red blood cells because her red blood cells, or Hematocrit, are really low as well. The purpose of red blood cells is carrying oxygen and nutrients to every cell in the body. When they are low people are pale and really tired....Raylee is really pale and has been really tired. Also, her heart rate is skyrocketing. A normal pulse rate for a child her age is 110 to 120, hers has gone up to 199. A red blood cell transfusion will help lower her heart rate and help her feel a little bit better. Of course there are risks involved with a transfusion such as infection and allergic reaction. The immunocompromised patients receive really clean blood that is tested even more than normal. It isn't about just matching Raylee up with the same blood type; its about matching her up with the same blood type that is free of all kinds of bacteria. The blood used for these patients is the cleanest it can come as far as medical science has found to purify blood. Raylee is at day 7 after her last Chemo treatment and days 7 through 10 are when the cells continue to drop to their lowest point before they start building up again--we still have 3 more days to go with blood cells and platelets dropping. I asked the hematologist doctor who is working with us tonight if this was common. She said it was, they see it everyday. I have never missed having a simple, boring, and ordinary life as much as I am right now. When Raylee is a cancer survivor and life gets ordinary again, I will never take it for granted; I miss it so much! And I miss my Raylee! I miss my family and my marriage. This was and still is a rough trip to the hospital because it really put the seriousness of her cancer and treatment in a perspective that reveals we are at its mercy. Also, Jerry is home sick with a stomach flu or something and can not see Raylee or come up here. This is breaking his heart and he feels bad and even more helpless. But we have to take extreme precaution with her-now more then ever! It is hard to except that life can be compromised by something as small as a white blood cell. I keep reminding myself that the staff here deal with these situations day and night....and Raylee will be okay. It is heart breaking to know she is so uncomfortable and in pain. I know a war is going on inside her body and I've pleaded and cried to Heavenly Father to help her through this--I don't know how much more I can watch her in pain and fear--it doesn't seem fair...but I do know it is a mere fraction of what God witnessed His beloved son suffer through. For some reason however, at this very moment...this early morning at 5:00 am...that isn't making me feel any better.

Chemo Kid

The days after Chemo are difficult; actually 1 1/2 weeks after Chemo are difficult. After Chemo Raylee has nausea for days. She takes nausea medication but she dislikes taking them. I don't blame her for disliking it....but I do ensure she has them. She would feel extremely worse without them and would probably be really weak. Some of the difficulty in the medication is she has them frequently. Each day I write down a schedule with each medication listed and the time she needs it. This helps Jerry and I stay on track. Lately I have to write down everything to remember....I struggle focusing on other things; my mind and heart are overwhelmed with the unknown and unpredictableness of what's going on with my little cancer kid (Jerry started calling her "our Chemo kid"). I also worry about Jorja and if all her needs are being met. She struggles with feeling jealous of Raylee and gets really scared when Raylee is throwing up. This battle against cancer isn't just Raylee's struggle and war....it is a family, friend, medical staff, and community battle. We have great supporters out there and we love and appreciate you so much! We have some new support groups in our life that I will blog about another time.

This weekend we continued focusing on med management and struggled with Raylee to take all of the medicine. I have tried what the child life specialist recommended, and sometimes it helps. At the hospital I discussed with the nurse practitioner Raylee's bad experience with liquid oral meds and she was able to get the main nausea medication for Chemo patients in meltaway tablets. She said it is difficult to get insurance companies to approve it but she was able to. I am not sure why insurance companies don't like approving the meltaways....these tablets were actually 7 times less expensive than the liquid medicine. They are also a lot easier for young children to take. It doesn't taste good so we put it on a spoon full of sugar to try to encourage Raylee to take it.....I am desperate to try almost anything.

I am trying to gear up for this next week. This will be the 7-to-10 day period after Chemo when the blood cells are at their lowest. It is a fearful time due to her weak immune system and an already over protective mother puts her guard up even more. We have hand sanitizer all over our home, Clorox wipes at hands reach, and disinfectant spray ready to go. My hands are so dry from washing and sanitizing them every 5 minutes. I will spend next week keeping Raylee away from germs and bacteria as much as possible. This means she will not have many visitors. I can't remember the last time we took her out in public (besides the hospital) since this nightmare stated. We get extra extra cautious at this time and super protective. She had good moments this weekend and played more than I thought she would. She seemed to be doing well so we slowed down the antinausea meds and on Sunday stopped them...this was a mistake however; Sunday night she was sick again :( Because she is so young she still doesn't have the ability to really express how she feels or if she is getting nausea--it is somewhat a guessing game. This round of Chemo has been easier then the last; the oncologist said it would be harder. I think this time we knew more what to expect.