Round 2....

Ok, so I haven't written in quite some time...Not sure if that is because of being busy or because I have been afraid to. When I write I really allow myself to feel....and most days I don't want to feel. I am afraid to "feel". If I did, I would never get out of bed. I would simply cry all day long. I cannot begin to adequately convey how much I hate cancer. I hate that my baby is fighting for her life right now and the best that I can do is tell her I love her and pretend that I know that she will pull through this. I don't let her see the fear that grips my heart. I am so overwhelmed emotionally and I don't know who to turn to. As I sat this morning at the kitchen table preparing Heather's weekly medicine and supplements, I just stopped and gazed...This is what her life, my life, our lives have become. A seemingly never-ending future of pills and supplements and treatments and needles and bloodwork and MRI's and surgeries and doctor visits. I was so afraid of her growing weary....though I think I am the one becoming weary...she has seemingly become stronger. She broke my heart the other night... She came and got me out of bed to talk to me. She said,"Mom, It seems like all I can ever think about when I go to sleep now is dying, and I'm not afraid of it. I'm more worried about leaving you guys and how you will be after I die." She said, "I am thankful that this happened to me because it has really brought me and God closer. We talk all the time now." Oh how much more spiritually minded she is than me. I am grateful beyond words that she has been able to develop this deep relationship with God. I just can't lose her. I honestly do not know how I will live without her if He takes her. For those that don't know we received the results from her latest MRI to check post treatment results....Her cancer has slightly progressed with no notable shrinkage of anything. It helped nothing. Besides giving my baby girl irreparable damage to her brain that she will experience for the rest of her life if she survives this. I am thankful that her 2 focal tumors have not grown, but they greatly enhanced which indicates they are growing now. So at best, the radiation/chemo bought us 6 weeks. Which if that is all I can have, then I am grateful. She goes in early in the morning tomorrow to have a port a cath implanted . She will have surgery. The cath will run from her upper left side of her chest to right above her heart. A relatively simple surgery that LOTS of children have done, but the thought of something being implanted in her and placed right above her heart terrifies me. They plan to inject these poisons into her and put them directly above her heart. The need for this is that it decreases the risk of the chemo accidentally coming into contact with her skin and causing burns....THEY ARE INJECTING THIS STUFF INTO MY PRECIOUS CHILD'S BODY! And I can do nothing. I have to let them inject THREE of these poisons into my baby for an entire YEAR in hopes that it will kill the cancer but not kill her. This is the ugliness of cancer. Childhood cancer. Days like today I just want to melt down and roll up into a ball and close my eyes so tightly and pray that when I open them this is all a dream. A terrible horrible dream. I just want time and life to STOP. I often feel like screaming at the top of my lungs, though no one would be there to hear my cries...Life will not stop. Life continues on as it always have...while our lives are in shambles....everyone else's isn't. Everyone goes about their normal day while my daughter fights for her life. I am just being really real atm. I know that these words are unfair, but it's how I feel. It's how every parent with a terminally ill child feels. Even our own lives have to continue. Work must still be done, so money can be made and bills can be paid. It's weird, because all we could dream for is for our normal lives back and our babies to be healthy, but to have this happen and continue on with everything like it isn't happening is gut-wrenching. Ugh, is all I can say. Ugh. The saddest part is....that I am a drop in the bucket compared to all the parents out there that are living this. All the parents that are saying goodbye to their babies today because cancer won the fight. All the parents that are trying to figure out how to live life with a major piece of it missing. I see it everyday now. A mother who lost her 12 year old son to brain cancer just 2 days before Heather was diagnosed trying to survive his death and somehow just "move on" with life without him. It's so heart-breaking to see...Watching a parent who's life has adapted and morphed over the course of months or even YEARS into everyday's focus is on beating their child's cancer, to not knowing what to do after their child passes. The battle is over and their hands are left empty. They look around and just don't know how to function. All they have become accustomed to just halts. No more doctor visits, or blood work, or chemo, or scans. No more life to fight for. No more hugs or kisses, or hearing, "I love you". No more smiles, or caresses, or deep looks into beautiful eyes. I see these parents and my heart grieves so greatly for them....and then unimaginable fear grips me that one day I might be them and I grieve for myself. I cannot tell you how much I HATE grieving for my child that isn't dead yet. Living with the daily "what if's" the future holds... I have many mornings when I wake and fear that she might have passed in her sleep and I hold my breath while I go in to check on her. Then relief comes when seeing she is fine, to then having the realization that one day, I might be presented with the opposite. One day holding her still body and begging God for another breath. One more time to tell her I love her. To hear her voice, to see her amazing smile, to look into her eyes. There is so much fear. All the time. But, all suppressed and neatly hidden away. I can't allow Heather to see it. And having the opportunity to confide it all to someone else is a rarity. So goes life I guess, and why I am SO thankful for a blog!! Even if no one ever reads it, it gives me the opportunity to let out my feelings...and sometimes that's all I need. agh......... Now, to wipe my eyes, and go fold some laundry with the feeling of gratefulness that I still have 3 children to fold clothes for.

Preparation for change...

I realized I hadn't actually posted this, so I thought I would now...

                              

With the knowledge that Heather will in fact lose big patches of hair while she undergoes radiation we had a hair cut/shopping spree for wigs last night. My wonderful sister was so sweet and took us hair shopping. We went to several different shops and found Heather 3 different affordable wigs to wear now or when she starts losing her hair, though she is awfully fond of wearing them now as well. Afterwards, we took her to get her hair cut in such a way she could wear a wig and you wouldn't be able to tell otherwise. 

She is just SOOOO beautiful!!! 

Last night she seemed to do well with the extreme change. This morning it hit her hard and we needed to have a cuddle time while she cried over the fact that her hair is gone. Rough morning. I so wish she didn't have to go through all this. It breaks my heart. The best that I can do is fight for every thing I can find to help heal her and hold and comfort her when she isn't feeling well. I wish I could just take it all from her. I would go through it myself if I could spare her from it.

Learning to cope....

Well, first a little update on where we are at the moment.... Heather will be starting her 15th treatment tomorrow. 15 out of 35 treatments. We are almost halfway through her treatments. Up until this past Wednesday she hadn't really experienced any hair loss....Wednesday we started noticing it falling out and by Friday she had a huge bald spot on the side of her head....Today she has another one in the back. This has been hard on her. We all knew that is was going to happen, but I don't think we realized how fast. Otherwise, we really can do nothing but Praise God that even though she has radiation and chemo everyday, she feels good. She's a little tired after her treatments, but not even enough really for her to consistently nap when she gets home. Her blood work shows that her immune system is still in the high range of normal. What a blessing! Today in church we sang this song....

All I have is Christ

What a song. I love this song. I broke down towards the end. I couldn't take it. The lyrics, "use this ransomed life any way you choose"....I sang this words with my heart, but then fear overcame me and the only thing I could think was "anyway but that way"..... His Will scares me. I am petrified. I find myself saying anything but that God. Anything else.....Please don't take my daughter. Please do not use me in that way. I don't want that to be part of my story. I don't want to explain that even though I only have 2 children with me that I actually have 3 and one of them is no longer with us. I cannot even begin to convey the fear that grips my heart. I hate it. I wish I could say that my faith is strong. But, it isn't. I have seen cancer bust into peoples lives and steal their loved ones away. I know that God chooses to heal some, but He also chooses to take others. I keep praying that He will heal her. But I am having a real hard time saying,"Lord, not mine, but Your will be done." I find myself trying to "take her in". Just watch her and take in every little facial expression and sound she makes, I take more pictures, I take more video, purposefully getting more intimate details of her for fear of one day that might be all that I have left of her. Just memories and videos and pictures to watch and wish I could return to that moment to hug her tight once more and tell her that I love her. I cuddle more. I kiss and hug more. I tell her that I love her all the time. Probably a 100 or more times a day. I do everything more. I feel I need to, and that scares me. I wish I could have unwavering faith that I KNOW that God is going to heal her. Most days, internally I have my little fits with my arms folded and my mean face on and am saying, "NO! She cannot die. I won't let her die." I am constantly researching, adjusting her "protocol"....adding new stuff that I have read helps. I know that I am making her grow weary, but I think...."If she beats this, it will all be worth it!" I HAVE to do everything that I know how to do to try to save my baby girl. I cannot sit idly by and watch her live or die. Most days I am in my "Go" mode. I am on a mission. A mission to find a cure for her, to find something that will keep the cancer from returning after treatment. While in this mode, I cannot allow myself to feel. The pain is too great. If I allowed myself to openly grieve, that is all I would do. I wouldn't be able to function. The only way I am "coping" is to take one day at a time. Focus on the day at hand and be thankful that it is a good one, while praying tomorrow will be the same. I need to blog more. It really allows me to vent my emotions. Something that I haven't done in a while and honestly I was starting to get scared about. After she was first diagnosed, I would have regular breakdowns....usually every 2-3 days. But, I have noticed that they are starting to come less and less often. That scares me. I am afraid of my heart being hardened and growing numb. I know that my greatest medicine and the only way I will make it through whatever lies in our future is the ability to grieve my way through it. I pray that the Lord keeps an eye on my heart. Allow me the ability to set my emotions aside to get done what needs to be done, but be able to cry out all the built up emotions later. Please continue to remember our family in your prayers. I am thankful for you bringing us before the Lord when at times I am even to emotionally weak to pray myself.

Wed. August 20, 2014 ~Heather update~

Yesterday Heather had her second MRI to check the progression of her tumor. Today we met with her oncologist, Dr. Esbenshade, to discuss the results. He gave us bad news. He said that her tumor is presenting itself to be very aggressive. These are pictures taken from her first scan and yesterday's scan, You can see a "spot" about the size of a dime in the lower right area in the first picture and how in the second it has grown significantly. The third picture is just a big picture of them both pulled up side by side together, however the order is reversed with yesterdays scan on the left. I will have to figure out how to get a video on here of the whole thing.

                                              

We have an appointment with her Radiation Oncologist, Dr. Tenenholz, tomorrow to discuss the preparations for radiation therapy. We did not want to go this route, but with the aggressiveness of her tumor we are just giving it time to grow bigger and lowering her chances of long term survival. With that said, the plan is for her to receive 6 weeks of radiation (hopefully in Clarksville) and have a weekly appointment at Vanderbilt for a check-up. Then there will be a period of 6 weeks where the radiation has a residual effect and she receives no active treatment. In that time we plan to return to Oregon and allow Troy Morris (her biochemist) to attempt to find a good profile to match her biochemistry. So once we get definitive dates nailed down as far as when she will be done with her radiation, we will then start planning our stay up there. It could be 4 or more weeks. 

Heather is feeling good right now and has no symptoms. A definite praise. Please continue to keep her and our family in your prayers. Prayers for complete healing doing whatever is needed to be done to accomplish that. Pray for Eric and I as we make hard uncertain decisions. Pray for peace in our hearts. Also, through the Lord's providential planning I have been connected with a family that has a 15 month old daughter. She has had seizures since birth and is currently on life support at Vanderbilt. Please pray that their little girl finds the help she needs!! Her name is Alia. Thank you all!!!

Where to begin????

I should have done this a long time ago, but I haven't had the will power nor the free space in my brain to sit down long enough to get this started. I copied my first two messages from my other blog to this one so that I don't have to re-explain it all. So.... this blog will serve as Heather's central update center. Also as my outlet to release feelings and such that I need to get out along the way.......

An update on Heathers journey...8/10/14

I wanted to give everyone a more detailed update on what is going on right now with Heather. We(my mother, Heather, and myself) are currently in Oregon seeking the use of cannabis oil to  help Heather. We have read so many success stories with using it for brain cancer that we felt strongly that this is where we should go. We are working with a wonderful biochemist named Troy Morris. He is truly an amazing man. He will be working with Heather to try to find a strain that will actually help her. He plans to conference with her oncologists at Vandy tomorrow morning and we will go from there. For him to adequately conduct his research and try to pair her with the right strain he will need time. Possibly a month. So we will be here for possibly a month. We are praying he finds the correct strain on the first try!!! Once/if he finds a strain that will indeed help her, then we will go from there to figure out the in's and out's of returning home. A lot to process and plan. We were blessed to find an apt. that is fully furnished and will accomadate us while we are here. I am still in the process of figuring out a good solution to having a vehicle as I will need to return our rental on wed. Our landlord said he has some vehicles that he might could loan me, but we haven't talked in great detail about that yet. Please keep prayers coming for healing and guidance. Thank you.

Angel

July 10, 2014....the beginning of a different journey....Heather's journey.

So today is Thursday, So much has happened in the past few days. Something that no parent ever wishes to go through. On Tuesday I took Heather to the dr. because she was complaining of double vision. She's been having some bad headaches that seem to be well controlled with ibuprofen, so I wasn't too overly concerned with them. I never in my  wildest dreams expected to be where I am right now. The Dr. did a number of motor tests which Heather passed with ease. So at the conclusion, the double vision was still a mystery. She decided to be safe and order a CT scan to just check make sure it looked ok....

So we went home, ate lunch, and went up to the hospital to have the scan, then we were to go on back to the Dr. Office to discuss results.

.....the scan shows something, but they aren't sure exactly what. They refer us to Vanderbilt. By this time, I'm concerned... but still not fully grasping what's going on. They can't get us an appt. soon enough so we were instructed to go home, pack an overnight bag, and just drive to ER at Vanderbilt to be seen. I'm really concerned now, but again... not FULLY grasping what's happening. 

So we get a copy of the CT scan and we go home to pack a bag and to make arrangements for Jacob and Emma while we are gone. I had also called Eric and instructed him to get off of work at his regular time and explained to him what was going on.

Fast forward... We get to the ER and they admit us, and we stay overnight...scheduled to have a FULL MRI on the brain and spinal column done the next day which will be approx. 3 1/2 - 4 hours long. We weren't scheduled till 2:30, but apparently the child that was ahead of us had eaten something and was unable to have theirs, so Heather got to go at noon instead. 5 hours later the bring her back up and we wait to hear the results. 

The Dr.'s come in and explain that they haven't fully analyzed the scan, but that she does have a mass/tumor in left front temporal lobe. 

"I'm sorry....did they REALLY just say that my daughter, my beautiful Heather has a brain tumor????" This can't be. THIS CANNOT BE HAPPENING! I don't know how to process this. I DONT WANT TO PROCESS THIS!!

They continue to explain the oncology team(had to look that one up)... The CANCER team will look at her MRI in the morning and talk with us, and then they(neurology team) and the oncology team will meet and discuss what the best way is to go about getting a sample of it. Whether a spinal tap or to actually have surgery and remove a piece of it to be tested to determine whether it is cancerous or not. Then passed that, they will discuss treatment options and we will go from there. 

So.... That's where we are. It's now Thursday morning and we await the oncology team coming to speak with us. At this point, I understand the gravity, but I don't want to believe it. "How does this happen??" "How can we be HERE and they are talking about MY HEATHER???" "This just can't be happening. This can't be real!....How can this be real?!?"

So... Time to regroup, collect myself and be strong in front of my precious baby girl. She had a bit of a rough night last night. She is terribly sore from the MRI, (being completely still for over 4 hours) and she apparently bit her tongue a little on the tip while she was out which has been painful for her. Her blood pressure was a little high and her heart rate was elevated also. I still don't feel as though she has FULLY woke up from the anesthesia, but I know she's also naturally tired, so I'm gonna wait and see how she does this morning once she wakes up. 

We(Heather and I) were talking about all of this last night, and I told her she is in the best place and they are going to help her get better. We just got to trust God and pray. And she asked....

"But mom... what if God wants me to die?"  

I didn't know how to answer that. I've been asking myself the same question.

I told her that I believe in my heart that God isn't done using her and her amazing heart in His kingdom. That she is so special and her heart for special needs children is so beautiful. I told her that I could see her growing up and being a special needs teacher like Mrs. Melinda to which she gave me a big smile. She then said," I like the little kid that is next to me... He doesn't cry loud, just whimpers a little. I explained to her that I had observed in passing that it looked like maybe his face was swollen and that he was a little boy, toddler age. She said,"Mom, can we pray for him?"

"Absolutely baby, I am feeling God leading me to go pray with his parents". So we said a prayer for him and then I went next door and talked with his mom. And then we opened up the curtains between rooms so Heather could see him and she smiled and waved over to him and then I proceeded to pray for him and his family. He is 3 1/2 yrs. old. I think his name is Isaiah... I can't remember exactly now.. But he was born with spina bifida. He had brain surgery. One of many, and many more expected in his future. Please pray for him. I told heather later that maybe once they get everything sorted out and she feels up to it, maybe we could go around the hospital and let her visit some of the children that are here and play with them. She smiled real big and I just held her hand as she tried to drift off to sleep.

I am still in disbelief, shock...I don't even know what I am right now. Every fearful thought I have, God is there to reassure me. I know He is in control. I have peace in that, but honestly, I fear His will. What if  He decides to take her home?

A thought I cannot even bear to think about right now. I just have to continue to pray for healing! I know there are many people that are interceding for my baby girl right now and I am grateful beyond words. Please keep them coming. I don't know how often I will post on here... I have thought about starting a different blog for Heather and this journey she is embarking on. I don't know if she would even be interested in having/writing one.. But I think I'll ask. I'm not sure if I can make a new one from my phone or not, but I'll try if she wants to do that. 

I'll continue to post what I know, when I know to fb. We covet your prayers. 

Angel