2nd chemo session done!

Belle’s Chemo Treatment

Since my last post…..Belle received her single dose of Vinblastine last Friday.  The process went very well and she seemed to be in a better mood for the most part that day.  I can certainly tell she does not enjoy Fridays…which I totally get!  We decided not to give her any of her anti-nausea medication this time to see how she managed after the chemo.  Overall I would say she did great!  No nausea, sickness, or apparent side-effects.  So far no significant side effects or apparent hair loss from the chemo…they did indicate some thinning is likely but nothing as of yet!

We have started on the cannabis oils…..administering them daily and increasing incrementally each day to get the recommended dosage.  She seems to be taking to the concept of taking daily drops of this mediation very well.  I told her that she has to keep in her mouth without washing it down with water for 10 seconds.  So she sits there and counts to 10 every time I give her the drops and then take a drink of the water.  It’s actually very cute to watch!

(Belle with her "Bag of Fun" donation from Children's Hospital)

We went to Cohen Medical Center on Tuesday to get her an official red card…..just trying to follow the law and make sure we are doing everything correctly.  That was quite an experience and there was a wide array of people there for what I could tell was for many different reasons.  I can tell you that Belle was the youngest patient in there by 25 years!  We met with two doctors per state law (minors are required to be cleared by 2 MD’s), first was a cosmetic surgeon and the other was a well-versed clinician (Dr. Cohen himself), I would say he was in his mid-80s.  It was a very pleasant experience as Dr. Cohen said that he has seen this regiment of THC and BCD oils work and work well for brain gliomas.  He even commented on a various clinical papers that he read from University of Colorado Hospital from the 80’s that substantiated the validity of THC and CBD oils killing cancer!  Works for me….one more testament to this regiment working!  We immediately left there to get the tinctures (THC extract) so that we could begin that process ASAP!  This aspect of her medication regiment obviously gives us a little concern since we are giving our child THC but rest assured the first drop she took went well and there were no visual signs of the THC being in her system so just like the CBD oil we will slowly begin to administer more over the next week or so to get her to the advised dosage!  If you had told me a year ago today that we would be in the situation with Sarah being diagnosed with breast cancer, my sweet Belle being diagnosed with a brain tumor and us beginning to administer medicinal marijuana to my 7 year old for treatment…..I would laughed and said no freaking way!

Isabelle has also be selected to participate in an official clinical trial/study sponsored by Children’s Hospital to monitor and follow children using cannabis oils to treat cancer.  She is 1 of 150 kids in the nation currently participating in this study.  Tells me there is something there and some founding information that shows that this actually WORKS!  Apparently the grant is fairly big so bravo to Children’s for starting this process to potentially give other families in the future hope that they rightfully deserve.  I wish the study included administering or providing the actual cannabis oil and THC extract but due to state regulations they cannot use grant/state funds for that purpose so buying this is all on us!  So the donations that are coming are so helpful because this will not be cheap but it’s obviously well worth it!

I can tell you at no point did any doctor or oncologist recommend this as a treatment option….sad but true!  Given no official stamp of approval by the FDA or government will prevent a licensed clinician from saying so!  That’s my opinion…So in that regard I want to thank Jianna Wright from the bottom of my heart for taking the time to share a simple article about a 18 month child whose brain tumor was completed cured by utilizing cannabis oil and THC to eliminate a stage IV glioblastoma!  Without that article I would have never even thought of this for Belle….obviously time will tell if this is effective but I can’t say enough about how much I appreciate Jianna for sharing that with us so we can begin this journey with Belle.  As you can probably tell we are so optimistic and have so much hope that this will aid in the process and kill that tumor and heal my Belle. 

Other than that PT is coming along so well that Belle is even starting to run a little and things are almost back to normal, she still struggles with going down stairs a little bit as you can see she has to check herself sometimes and you can see on rare occasions she may stumble a little bit….but I can tell you that the physical therapist are amazed by her progress from where she shortly after she had surgery.  She a trooper and just continues to improve every day. 

I did want to share a special moment I had with Belle last night that made me see how truly strong my daughter is!  So Belle very rarely cries about this and is quick to just say I don’t want to talk about it!  That’s her way of dealing with cancer…fine by me baby girl…you don’t want to talk about it now…no big deal, I’m right here if and when you do!  So I was just sitting at the dinner table with Belle before bedtime eating a bowl of cereal and helping her with her math homework.  I was thinking about how normal it felt!  I started to think how appreciative I am for so many of you out there helping out in so many different ways and putting my family first in your lives and looking out for our best interests and I was just overcome by that love & support that everyone is providing….I started to cry and Belle always gets a little concerned when Sarah or I cry….she seems to know that we are crying because of her struggle and that she’s fighting cancer.  She stood up and said “Are you crying daddy?  What’s wrong?”  I said “nothing is wrong baby, I’m just so happy that there are so many people out there that love YOU and are supporting YOU!”……..her respond was so priceless…she put both her little hands on my cheeks and looked me straight in the eye and said “Don’t worry daddy….I’m going to beat cancer!”……that kiddo melts my heart!   She is so amazing! I can’t say enough about the fight and will in that little girl….something to truly admire!  Fight Belle Fight…Stay Strong!  She definitely keeps us going….

Things are moving along and just taking one day at a time.  We try and not look to far ahead.  We do have Sarah’s final reconstructive surgery on the January 29^th so that will be good for her to close that chapter of her life and forge ahead!  I like to think that the McAllister’s are badasses at kicking cancers ass!  It’s not something that we asked for but we will go through this journey with God carrying us along the way!

My cousin Carrie sent us a nice card along with some biblical verses that she said has helped her through difficult times.  I wanted to share two with you that seemed to touch home:

Isaiah 41:10 – “So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand”

Psalms 103:2-4 – Praise the Lord, my soul, and forget not all his benefits – who forgives all your sins and heals your diseases, who redeems your life from the pit and crowns you with love and compassion.

Life isn’t always a walk in the park…..there will be times of tragedy and heartache but there will also be joyous moments and times of celebration!  Enjoy life my friends and be thankful for the all you have…I know I am and I appreciate so much of what life offers!

Until next time….thank you as always for all the support and love…continue to say those prayers fgor Belle and her healing so God hears us! Without all of you out there helping us this journey would be much more difficult to navigate!

Remember to mark your calendars for the fundraiser at BBCF on February 27^th and help support Belle!  I will post the flier again as we near the fundraiser date!

Thank you,

Mac

Chemo Begins!

Chemo Begins

So everything went well this last week and Isabelle started to acclimate to her power port.  She was still walking around like the Hunchback of Notre Dame through Friday as she was so hesitant to move that area of her upper body….bless her little heart!  She was still very concerned about the “numbing cream” that would have to be placed at the port site but she finally mustered the courage to let mom put on the numbing crème prior to going for chemo.  She is so brave and so amazing!  So we got to Children’s Hospital South Campus at about 9am ready to start this process and put this chemo session in the books!  One less chemo session that she has to go through and one closer to being done!  When we got there all of the infusion rooms were occupied except for one….that’s crazy that many kiddos are fighting cancer and the will to survive!  It’s sad and it makes your heart ache that these kids have to go through this at such a young age!  Well we settled in for a long day and figured it would take about 4-5 hours to complete blood/lab work, flushing the lines, giving fluids, and administering both of the chemo agents.  Belle kept herself busy with her math books, Princess Diaries 2, and going to the bathroom 5 or 6 times.  She was a little moody but I completely get it….I can imagine a million other places to be that that point in time!  Overall she handled it very well and she didn’t feel the poke for the port at all!  We ended up finishing up and heading home around 2pm.  We got her home and prepared for a lax weekend.  Nick and Brooke Kelsey brought us dinner which was wonderful and the kids hung out and watched Minions.  You could tell that Isabelle wasn’t 100% but she was hanging tough.  I think that things really started to hit her on Saturday afternoon into Sunday night.  She was really tired yesterday and she fell asleep at 6pm.  We hoped that she would be inclined to go to school today but the lack of eating and a mild headaches really didn’t position well for her to go to school all day long.  We will try again tomorrow!  We figured that these two chemo day Fridays would be like this following treatment…..a little harder to bounce back!  We hope that next weekend is much better for her only having to get the Vinblastine. 

She also went back to school on Thursday of last week for a the day so she as super pumped about that and being able to se her friends...enough said there!

I did want to let everyone know that the GoFundMe account is going great and we are strongly considering cannabis oil to aid Belle in her battle against her brain cancer.  A dear friend shared an amazing story (http://www.naturalnews.com/046994_cannabis_cancerous_tumors_miracle_baby.html) in which a child's brain tumor was completely healed and eliminated by utilizing cannabis oil with concentrated CBD and low THC ingredients.  We live in a state that has these alternative treatments available so we will explore this option to compliment her chemotherapy treatment.  The cost from what we have been told can range from $800-$1000 per month so we feel that is well worth the try.  There are a lot of articles out there that share the same claims that these properties in the cannabis oil “Charlotte’s Web” has the capacity to significantly reduce most side effects from chemo and kill cancer cells more specifically those in gliomas (brain tumors).  So needless to say the generous donations by so many will help us cover our $3500 fiscal year deductible (July-June) which we will have to cover again starting gain in July since her treatment will carry through December and a 12-month supply of the cannabis oil treatment.  We are very optimistic about Belle beating this cancer and never looking back.  If we get great results heck we may just have to add Sarah to the treatment….can’t hurt!  I guess we will just have a bunch of cannabis oil peeps in the McAllister household! LOL….I guess we have to consider all options rather than just focusing on synthetic toxins which can have long-lasting side effects.


Other than that Belle is doing pretty good overall and we are hoping that she starts feeling a lot better soon!  We understand this is par for the course when getting chemo and we will do everything we can to make her feel as good as she can!

I was also able to get her to go out of the house to go to Red Robin....yum!  She so funny and you can see her grandma "TuTu" photo bombing in the back!  She finally said on Thursday that it was time to get out of the house for a little bit!

I did want to share the information about the fundraiser that is taking place for Isabelle and the whole McAllister’s on Saturday, February 27^th at Backcountry CrossFit!  Now I know not everyone out there reading this blog is a CrossFitter or some crazy fit muscle head but that’s ok….we would love to see everyone out there and come join in supporting Isabelle as there will also be a Pot Luck following the WOD’s.  It’s going to be a great day and great opportunity to show your love and support for Belle and that she has a ton of people cheering her on to beat this cancer!  I do want to personally thank a couple of special people for making this happen…..First a huge and special thank you to Ashley & Steve Hartle (owners of BCCF) for allowing this event to take place at their wonderful CF box and just being so thoughtful and caring during our time of need….I also want to thank Nick & Brooke Kelsey for their help in organizing this event, I have had the privilege of Nick being one a my oldest and dear friend since I was 16 years old….his friendship and support means so much to me…..he is a lifelong friend and his friendship means the world to me…(that’s enough of the mushy gooey stuff for my “bromance” as my wife refers to it J)…..and of course Brooke, she’s amazing and Sarah and I are so grateful for her kindness and support.  I also want to thank Jenn Baker for helping create the fundraiser flier…she did an awesome job and she’s also a great cook (the Baker's rock)!  Not sure what her being a great cook has anything to do with it but I did want to compliment her on her cooking skills!  But seriously I want to thank these people for taking time out of their busy days to make the McAllister a priority….its means a lot!

All the support we are receiving from all over the place means a lot and it helps us get through the day!  I recently found out from a former dental resident of mine that is volunteering her time in Madagascar to help those in need and she informed me that there are prayer circles from Madagascar for Isabelle…I’m truly amazed about all of this and how much my little is loved and supported from all over the place.  I have had many friends tell me that there are prayer groups all parts of the country that are praying for Belle….God’s presence is real and whatever his plan is…we are trusting in him!

Thank you as always for all the love, support, and prayers….God bless all of you!  We will continue to fight this battle and support Belle and just take one day at a time!  We will keep you posted about updates, further chemo, treatments, the cannabis oil and the BCCF fundraiser.  Of course as always if anyone out there has additional information about the benefits of cannabis oil relative to killing cancer please do share…knowledge is power!

Thank you so very,

Mac

Port placed and ready to start kicking cancer's ass yet again...lets rock it Belle!

Port Surgery Complete

 

(Belle in her 50's outfit for school a couple of months ago)

 



Today was a big day in beginning the battle against Belle's brain tumor....placement of this port is very important!  This amazing piece of technology that seems so simple helps so very much in the process of delivering chemo by accessing the bloodstream via the largest artery that goes into your heart.  Learning from Sarah's experience and having to deliver the chemo agents via an IV each time is difficult and painful.  The chemo and having to get intravenous sticks every time for chemo causes bruising and on some of the occasions seemed to burn her veins.  I do not want by baby girl to have to experience the same situation.  So this port will allow the doctors to take blood (when necessary), administer contrast for her MRIs, and obviously deliver the chemo agents.  So even though its another surgery to go through, its well worth it in the long run!  Belle was very anxious and scared after we told her that she would have to go through surgery again to get this device placed in her chest.  I can only imagine what was going through this 7 year olds mind regarding this "thing" that is about to be placed in her for the duration of her treatment.  She had a ton of questions and you could tell she was nervous and scared about the surgery. 

 

We thought it would be best to meet someone who had a port and to see that everything is ok when you have a port placed in your body.  We have a wonderful neighbor whose sister is going through her own breast cancer journey herself (by the way she's rocking her battle against cancer as well and is a strong woman) and thought that she would come over to talk to Belle so we reached out to her and she was more than happy to come talk to Belle and show her the bump where her port is located.  She came over and talked to Belle.....Isabelle had plenty of questions and ultimately did feel her port in her chest even though she was apprehensive to do so at first.  I think that did help alleviate some of Isabelle's concerns over this device that will be placed in her body.  Her biggest concern throughout the process seemed to be the fact that she would have to put numbing cream on her skin where the port is located about an hour before going in for chemo...bless her little heart she was scared that would hurt!  I can see how some of this would be so very foreign and misunderstood when you're seven years old.....I just want to help her not worry about such difficult things and protect her....I try and remind her to just to be a kid and let mommy and daddy worry about this stuff!  But I tell you what she's so smart and she does get most of this stuff!  I have to remind myself this is hard and scary on her as well....I'm sure she often worries about her future and her life!  I know that last night she was scared about surgery.  To be honest I was scared too and worried for my daughter...I can tell you that the last couple days have been difficult for me and I have struggled to stay positive.  Depression and sadness can sneak up on you when your at your lowest....well let me reassure you that Sarah didn't let that happen for long...I wish I could say that I was strong enough to pull myself out of my slumber on my own but that was not the case!  Yet again my wife provides the strength our family needs and says "Mac take a happy pill and get your s*^t together" (as kindly put as she can)...God bless that woman and her unfailing and never ending strength!  See I present like the strong one but to be all to honest this family's strength and ability to forge ahead starts with her...I'm sure most of you aren't surprised by this at all...so moving on lets just keep pretending that I'm really the strong one (wink wink)!!

 

So onto surgery...we got to Children's Hospital South Campus (thank goodness we didn't have to go to the main location) at 7:45am which was good since she didn't have to go all day without eating....we got to meet all the nurses, surgeon and anesthesiologist prior to surgery (everyone there is wonderful and so good with kiddos by the way.....that helps alleviate some of the stress).  Belle got to pick the smelly stuff for her N2O mask...she went with bumble gum although I though she should have went with watermelon.  This time we were able to join her in the surgical operatory as she went to sleep which very much helped calm her concerns.  We did have to get fully dressed up for the occasion in a full hazmat suit and blue mesh cap.....all I needed was a weapon and I was ready for a zombie apocalypse!  Imagine Baymax from Big Hero 6...I should have taken a picture of Sarah and I...Isabelle thought we looked funny!  She did great going to sleep and was calm....they said the procedure would take about 45 minutes...maybe an hour if everything goes well.  We went the family waiting room after leaving the surgical operatory at about 9:40am (thank you Julie for bringing food from Kneaders Bakery)and I didn't anticipate hearing for the surgeon for at least an hour to 90 minutes.....well the door opens at 10:07am and the surgeon entered and said "everything went perfectly"....freaking music to my ears!  Praise the Lord....Belle did great.....enough said!  Minimal general anesthesia and just a small incision...recovery only took about 30 minutes and we were on our way home...amazing!  We had to stop and get something to eat on the way....thank you McDonald's for your all day breakfast menu! :)

 

We spend the rest of today relaxing and watching television.  She is in very good spirits and seeming to want to eat every hour...that's a good thing other than eating us out of house and home!  She was adamant about changing into a dress once she was comfortable and confident about moving her arm just enough to get that dress over her arm (she loves her dresses and constantly changing throughout the day).  I can tell you that she still is very hesitant to move it all when she is laying on the couch or up and walking.  Our hope is that she is well rested and ready to go back to school by Wednesday...one more day of having to hang out with dad all day! 

 

So moving forward....Belle has progressed very well in her motors skills and walking on her own!  She still has some moments of balance control issues (vary rarely) but she is truly walking on her very own!  I can't tell you how proud I am and happy that she is able to just walk without assistance.  I too am guilty of taking the ability to walk on your own for granted....I'm so happy that she can walk  on her own...hopefully some day soon she will be able to run again!  Things are improving for Belle...God's healing is present and heavy handed each and every day.  We did have the conversation with her that she has cancer which I have been dreading and avoiding but she actually asked Sarah if she has cancer so figured its best to be honest rather than lying to her and waiting to tell her until we were ready....that would not be fair to her.  There was something calming about the conversation and the way she handled the news....we just reassured her that everything the doctors were doing were to help eliminate the cancer and get rid of "ball thingy" in her head as she put it.  She knows the medicine she will be taking is similar to mommies and is there to help stop the cancer from growing and keep it from  getting bigger.  We could tell that she was over talking about it when said "ok let's not talk about it anymore!".....I loved how she handled it and how strong she is!  She's a rockstar...there is no wonder or question where she get it from....I'm a very blessed and thankful man! 

 

Chemo starts on Friday (1st session of what I figure will be about 36 to 40 sessions till haven't done a complete count)...one session closer to the end but we will just take one day at a time!  We learned that all to well from Sarah's treatment.....we cant look to far ahead and just need to focus on today and allow tomorrow to worry about itself!  She will start with Carboplatin and Vinblastine chemo combination on the first Friday of the cycle and then the following two Fridays she will only get Vinblastine...then get one week (Friday) off and then start the cycle over again.  We need to see some reduction of the tumor in the first couple of months (MRI March 3rd) to ensure the chemo is working so prayer warriors out there continue to pray hard...I beg you!  Let God hear all the prayers for Belle's healing, that the chemo is working to reduce the size of the tumor, that it's killing the cancer cells and that she her body is managing the chemo. So this week is week #1 of 2016 and we start this journey in good spirits and great optimism.  With God at our side and watching over our daughter all is possible.

 

I want to end this post with a sincere thank you to everyone out there providing support and love in so many different ways!  We are so very fortunate and lucky to have the support, love, and prayers coming in from everywhere and from so many...words can't express our extreme gratitude and appreciation!!!   I appreciate each and every one of you out there....truly!  I wish I could thank each of you individually here for your words of strength, kindness, dinners, support, donations, and prayers but there are far to many of you out there to thank without consuming this entire post with those thank you's and words of appreciation...perhaps a future post will just solely be that! 

 

I did want to let everyone know of a fundraiser that will be taking place for Belle on Saturday, February 27th so please mark your calendar to come and share in this journey and support Belle, we would love to see everyone....details to follow in the coming weeks so please keep an eye out for that!  We will keep everyone posted in the coming weeks on her progress with chemo and to keep everyone informed of how things are coming along!

 

Thank you,

 

Mac, Sarah, Michael and Isabelle

 

 

Philippians 4:6, 7 - "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your heart and your minds in Christ Jesus"

 

Roams 15:13 - "May God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope."

 

Believe in the power of prayer! Amen.......