Archive for April, 2006

It’s Celebration Time!!

Friday, April 28th, 2006

The last week has been heartwrenching, exhausting, emotionally draining, and extremely scary. What we wanted more than anything in this life was good news from the doctor yesterday, and that’s exactly what we got! I want to share a couple stories so you can truly understand what’s been going on, and celebrate the good news with us!!! Wednesday the 26th, we took Boey into her 2nd MRI to see how effective the chemo was in killing the cancerous cells. The MRI anesthesiologist was very honest with us, and told us if the MRI is taking longer than it should, it could possibly mean they found something (metastasis)and would need to look further.

During her MRI, Rob and I after a long 3 grueling months of being in battlemode, broke down , held eachother, and wept for about an hour. We have been to scared to do this before, neither of us wanting to show emotion because then we would have to understand what it meant to cry. I know now that it wasn’t because we were weak, it’s because we didn’t want to feel ANY emotion because then it would all become to real. While we cried, we prayed, and talked about just how important this MRI was. I told him I wanted second opinions if the tumor shows it’s resistant to the chemo and everything else we were doing to kill it. I think seeing Boey lifeless and limp before she went into the MRI really affected us at this point. As soon as they gave her the sedative, her head immediately dropped down and it really freaked us out. At this point in her treatment, we don’t even like seeing her sleeping because she has to close her eyes. The whole MRI experience really put us on an emotional rollercoaster.

We wanted some answers, so we went and talked to Dr.Stork, our wonderful, amazing, smart, and funny pediatric oncologist. She told us to be prepared after this amount of treatment(12 weeks) of chemo, that the tumor itself will notbe reduced in size, but the cancerous cells around it, will be dead. She emphasized the cancerous cells should be fried, if not, that means this tumor is resistant, and we would face another heartbreaking dilemma. She continued to tell us that Jenessa is doing remarkably well with all her treatments. She hasn’t had any huge complications, and she was very pleased with how well she is doing. Rob and I asked her what the chances are of the cancer spreading while in treatment, she said it was very rare. Jenessa’s worst side effects right now are vomiting, being poked with a port needle(for accessing blood , administering meds, etc), a lot of ankle pain, unable to bend her fingers(this is nerve damage from the chemo), a lot of tummy pain, headaches, loss of appetite, high fevers(thankGod this only happened once), and fatigue after the chemo. Dr. Stork said that all these side effects could increase with the radiation treatments starting May 4th. The radiaton treatments will be 5 days a week, 28 days in a row. We are NOT looking forward to this.

Rob and I felt good after talking to her, and it helped knowing we would have the results the next day. Thursday morning was pure torture while I waited for the phone call. Rob was at work, and I knew I would have to hear the news alone, I just kept praying it was all good news. Dr.Stork called and immediately said ” Are you ready for some exciting news(with major excitement in her voice)”? She said that the necrotic lymph node in her neck that showed up on the very first MRI back in the first week of February(noone really understood how or why it was there because she had no metastasis)was completely gone, and the part of the tumor that started on her adenoid was completely GONE!! I just broke down, never said much and just listened to her voice. She continued with the good news that the tumor behind her eye is showing a decrease in size,and that she wasn’t expecting that at all and was pleasantly surprised by this. She said she rarely sees a decrease in the tumor, only the killing of the cancerous cells. Radiation is what shrinks the tumor, but this nasty tumor has seen it’s final days!! GO BOEY!!! Thankyou God for answering our prayers!! She said that she really honestly wasn’t expecting the tumor to shrink like it has. She told us we were doing a fantastic job of caring for our daughter, but I give all the praise to God and our brave, strong, spunky, and beautiful little cancer warrior!! We will see pictures of the before and after of the tumor this coming Monday when she goes in for the overnight stay for her big chemo.The tumor may not be gone yet, but it is shrinking and we have faith it will fry during the course of her treatment. The hardest part is the side effects of the treatment on her body. We still have a long road ahead of us, but this good news is what we needed to get us through!!!

Words cannot express how relieved, grateful, proud, and thrilled we are with this news. She still has to endure 7 more months of chemo and 28 days of radiation, but at least we know this evil tumor is frying and our baby is winning! Before we weren’t sure if anything we were doing was killing it, it was terrifying. Now, we know, and can go forward knowing what we are doing is working, and all the grueling heartbreaking moments Jenessa has to endure, are SO worth it!! She is the one who is killing this tumor with her determination, strength, love for life, resiliency, and her beautiful spirit. She makes the decision to matter how hard it is, to drink all her glutamine(she hates with a passion), the neverending capsules, shots, pokes, tests, sideffects of chemo, the fear…she truly is our little hero. There is something to be said about the human spirit and a positive attitude. I believe the love, family and friends that surround her, and all the things that make her happy and give her something to look forward to, such as Chris Daughtry from American Idol, and everything else she loves gives her a will to keep on fighting!!! As you all know, yesterday was celebration day, and boy did we celebrate! Some very sweet angelsl(thankyou Jenn , Laura, Daughtry Gang, and Ryan from Absent Elements)sent her some incredible presents just in time to celebrate her big day!! Death of the tumor day!! Surprise surprise, she received some pretty awesome Chris Daughtry clothes, key chains, pics, pillowcase(for the hospital visits), and a CD/MP3 player which will be wonderful for her trips to the hospital. We just got the Absent Elements CD, and that’s all she listens to now.(huge thankyou’s to Ryan from AE)!! She keeps telling me that Chris’s voice calms her down, and makes her tummy stop hurting. It’s very very cute. Thankyou Jenn. Laura, Daughtry Gang, and Ryan from Absent Elements for the incredible gifts!!! She is flying high and Boey says THANKYOU for everything(she’s beaming guys…good work)!!!

God is answering your prayers, and is miraculously healing our beautiful daughter. We are forever grateful to all of you prayer warriors that are lifting our family up and praying your hearts out. God is being glorified through our daughter, and it’s the most awesome work I’ve ever seen! Although this is a very scary time, we know at the end of the day, he is in control and loves us more than we could ever imagine. He is an awesome God, and being close and trusting him is what it’s all about(it’s taken me awhile to get to this place, but I am here now and I love it).

Our Trip To The Coast!

Wednesday, April 19th, 2006

Boey does her best Chris Daughtry(American Idol)  impression in the hottub at the coast.

I added this and other pictures in the family trip to the coast section in the photo gallery.

We had a great time.DAD
This is mom. We went to the coast for Easter weekend, and had the best time in a very long time:)!!! Boey didn’t have a care in the world! We were beginning to wonder if she had gills because she practically lived in the hot tub impersonating her favorite Chris Daughtry from American Idol!! It was wonderful to see all of us, especially Boey having such a great time. We need to do this more often!! As I look back at the pictures, I have a feeling on Sunday she wasn’t feeling to well. The happy pics were mostly taken on Friday!! The look on her face in some of the family pics makes me think she wasn’t feeling to hot. She just confessed to me yesterday that she didn’t feel good at all on Sunday(when we took most of these pics), but didn’t want to tell anyone because she didn’t want to leave. I’m glad she had the time of her life before she got really sick on Monday, Tuesday and Wednesday. Today is Thursday, and she still has a low grade fever. Hopefully we will have the test results back soon. Keep the prayers in full force, we all need them more than ever right now!!

Scary Visit To The ER

Wednesday, April 19th, 2006

We’ve been experiencing some very scary moments around here. As you know from reading the last post, Boey had the “big three” chemo treatments(called VAC) last week with a low white blood cell count(almost didn’t meet the required amount). The doctor did warn us that she would drop drastically in counts the following week, but bounce back up. I just remember thinking, this is our Boey, she’s going to be fine, she will bounce back like she always does, God is protecting her. Late Monday night, she started with a low grade fever, me and dad took turns staying up all night and she kept going higher. Finally I called Doernbecher’s in the a.m., and told them what’s going on, they said to get her to the ER immediately. I grab Boey and rush out the door(not knowing what to expect or what’s really happening, but crying at the same time)and we finally get to the ER. I had Doernbecher’s on the line when we got to the ER to make sure that the doctors here were going to be ready for us, and to find comfort in going somewhere else other than Doernbecher’s. It was so heartbreaking because Boey refused to let the nurse access her port for blood draws, I.V infusion, etc, and kept screaming “it’s not numb yet”(she puts numbing cream on her port before they poke her with a ugly looking needle). At this point, dad and I realized she was so scared that she was saying whateever it took to get out of it. We were in a new place, with new faces, and she doesn’t have the best memories of this place to begin with. Everyone had to hold her down gently, she’s screaming and bawling(she’s never done this before, other than the very first time she was accessed), but I knew it had to be done. The cream was on there for an hour, and I knew the longer we put this off, the harder it’s going to be for her. I told the nurse to go ahead.   I think I cried more than my daughter(at least that’s what I was told by the nurses), I just stood in the corner and was bawling, this was heartwrenching. I have to say, the nurses did a fabulous job taking care of her. They came back later with the blood counts which were actually higher than Monday’s counts. This was a very good sign, it means that her bone marrow is doing it’s job. We still don’t know what the blood culture results are. I’m hoping to find out this morning. All day Tuesday we were at the ER and when we got home she was still spiking at 101.8. We were on the phone with docs most of the day, trying to figure out what’s going on with her and what to do next. Basically, the docs said this is pretty common(i’m thinking not with boey) for pediatric patients on chemo. The doctor continued to remind us that she went in to chemo with low counts,  and she probably caught a viral or bacterial bug(the anitbiotics kill anything bacterial), and she will be fine because her counts are on the upswing(yeah…very good news).She also said her monocytes(baby white cells) look fabulous(go Boey)!! The doc said I did everything right when I called them, and reassured me what a great job we are doing as parents.

Tuesday night is American Idol, we were hoping she would feel well enough to see her other bald hero perform. She heard his voice come on and woke briefly and mumbled something to the effect”mom, he sounds so good”, and then mumbled something later about another contestant. It was very cute. Even in her darkest moment, she still comes alive, even if it’s for a second, to give a little shout out to her favorite guy, Chris. Rob and I are frantically giving her these naturopathic drops, like every 10 minutes, down to 2 minutes, and her fever started dropping by late evening. We still thought we were going to go in to the ER again. We continued to pray over her, continue with the drops, and poor Boey is trying to sleep through all of this, we had to keep waking her up. By midnight, her temp was 97.8…THANK YOU GOD!! Thankyou prayer warriors! I felt like it was a miracle, because the way everything was going, the docs were saying prepare to bring her in…her fever most likely won’t go down if it hasn’t already. I knew in my heart Boey was going to be okay because God has been protecting and covering her since the very beginning. From the way it was revealed(doctors at OHSU told us they’ve never seen cancer revealed this way when she coughed up the tumor), there were just so many miraculous events that took place from day one. Rob and I were talking about this lastnight. We are very comforted when we look back and realize that God brought this to our attention and he knew that mom would not back down once her baby coughed up a piece of flesh, that I wasn’t going to let that go. He had it all planned out, we are all playing a vital role here. He does have a plan for our life, and he will and is being glorified through all of this. All of you that are surrounding our family with prayers, thankyou with all our hearts, God is listening to you and answering all of your prayers. These last couple of days were scary and heartbreaking, but in the end God is protecting our baby girl and loves her more than we could ever comprehend, and that’s where we find our comfort.

Medical Update

Friday, April 14th, 2006

This last week has been an emotional roller coaster…up..down…up…down…emotionally draining for sure. I wanted everyone to know how she is, emotionally, physically, and medically. I’ve been wanting to post sooner, but life has been really chaotic. We went in this last Monday for the big 3(all three chemo drugs, overnight stay), and after they drew her blood the nurse came back and said she her counts were to low to have chemo. I was so scared, this is the first time we had heard this. I asked her to make sure she had the right patient, Boey has been doing great. So after I left(didn’t want Boey to see me crying)and was bawling at the possible setbacks, and what this all means, and calling other doctors, and trying to figure it out, the oncologist doc comes in and says”oh, the nurse rounded it wrong, she’s so close to 750(the magic number)let’s go ahead with the chemo!!! AHHH! That was one emotional rollercoaster…not fun. He did warn us that with counts so low, she will probably be really really low next week. But we need to continue on with the chemo to fry this tumor, thankGod we did. She did great with the chemo, only threw up once Wednesday morning(not that much either). God is totally protecting her body, and she is being healed, I believe that in my heart.

I also am excited about the fact that she is almost done with her 12 week phase(2 1/2weeks to go)…with no serious complications…not even a cold:) The doctors said whatever we are doing, keep it up because she is doing amazing and on the high end of how well kids respond(this is the main reason the oncologist doc went ahead with the last chemo). Boey is remarkable. She has sooo many pills to take, glutamine to drink(she hates it, but does it anyways), 10 nights of shots, lots of different homeopathic supplements, gets poked with a huge port needle to get blood draws twice a week, and she does it all with a strength I’ve never seen before in my life. She is truly an inspiration to all of us. She has only complained a couple times about her hair loss, but when she does it really comes out!!! She stores it up,then watch out!!

As of May 1st, we will know exactly how much this nasty tumor has fried(she has her MRI, CT, x-ray on April 24th), and I am so anxious, scared, and excited. I pray they find that it’s almost gone, half it’s size, or miraculously gone!!! Please pray for her continued healing, all the prayers are working!!! God is listening..I just want to encourage everyone that this tumor really did mess with the wrong Boey, and that we couldn’t get through any of this without your prayers, support, and God’s strength. I want to thank all of you again for being there for us…extra prayers for our boys(god only knows they really need it)!!!!! Thankyou to the AI boards(hi Jenn, and all of you that have wrote me..there’s not enough room….never knew complete strangers could be so incredibly uplifting, encouraging, supportive, and loving(boey loves you C. Daughtry…I love you guys) the absent element crew(hi elena, K.Pike and crew), and the daughtry gang(hi jill, laurie, tammy, and my new friends there)!!! Thankyou to Papa’s Pizza for the upcoming fundraiser on April 24th……to the Burright campaign and his staff(you are so awesome) who adopted our little bald cancer warrior for the May 20th fund run, to all the incredible doctors and nurses that treat our daughter, Dr. Black and his staff who is Boey’s dentist and made her visit so fun she didn’t want to leave(no cavities..yeah)!, our awesome talented web designers(chad and misty)to our amazing church members(we are so blessed by the meals and prayers, luv u beth), to the Sparrow Club(thankyou Jeff and staff, you guys are wonderful), to Small Miracles, Little Beavers(luv u jan, boey misses you guys) the school system(hi paula:) Boey’s tutor Claudia, grammie’s sorority, REMAX 2000(you guys rock, luv u gramps and Becky)KMTR(hi Monica),to all of our friends(all my girlfriends, I really LOVE you guys..hi Shae Shae..Sherry, Lisa, Michelle, Ashy, Kara, and everybody else..u know who u r), family(we love you grammie(you are the best grammie a little Boey could ever ask for), grandpa(what we do without our grandpa)?wampsy( boey misses you wampsy, grandma Lynn, and Ozzie like crazy), new neighbors(you guys are a lifesaver), Lenea and family(love your music Lenae, it’s so uplifting, your voice is like an angel& you’re beautiful on the inside and out), to Fone Friends(hi linda), Annie(thanks for bringing gifts and hugs),Hannah montana crew(hi guys..thanks for bringing so much joy when you called),all of Boey’s little girlfriends(hi Helena, Beth, Sara, CeCe, and good friends)and strangers that have been so phenonemal with the prayers, support, and love for our family!!! I hope I didn’t miss anyone…if I did, please know that your love and generosity has touched our family and you have helped us through a very difficult time(you will never be forgotten). I know in my heart Boey wil win this, it’s going to be a very long difficult journey, but in the end, we will only appreciate the life we have even more, be stronger and able to help others, and be closer to God than ever before( I can’t wait for this to happen)!!!

Here’s a cute Boeyism. We are in the hospital and the nurse has to make sure that her urine is a certain PH before administering the chemo. I know my daughter very well, and realized after 20minutes she hadn’t gone to the bathroom(she usually goes every 10 min with the I.V drip). I looked at her and said”huney, you’re holding it so you can put off getting your chemo aren’t you”? She looked at me with the cutest smile(like, ooops, busted) and said”DUH MOM, WOULDN’T YOU”?  We laughed so hard, it was hilarious, especially when she got up and was twisting her legs all the way to the bathroom because she held it so long…lol…that was a true Boeyism. She figured that one out quick, smart girl!

I wanted to let everyone know, that we are currently working on posting all the guestbook entries(web designer is working on it), and my husband wanted to post a goofy pic of Boey, especially after posting the radiation picture(depressing picture), but hasn’t had time yet. He wanted everyone to see how brave she is, and what she has to go through, kind of a reality check….hopefully we can just post the mask and not her in it(less depressing)!! We are working on all this… is so busy right now, I’m sure you understand!!! Not enough thankyou’s in the world for all the amazing people out there who are behind us!!! Okay..I’m thinking this is quite the post…need to post more often so they’re not so long!!! Sorry! Alot to say…and I actually had some time, so I wanted to get it all in:))!!!  Take Care everybody and thankyou again on behalf of the Byers crew:)))

Goofy Boey

Wednesday, April 12th, 2006