McAllister Family Medical Fund
Donation protected
Isabelle’s Journey
Things began on 12/10/15 and Isabelle was complaining of headaches. Initially we thought she was dealing with a sinus infection or something else that was just causing her to feel a little under the weather. She seemed to feel a little better and then the headaches would start back up. She was in good spirits but the headaches were certainly taking a toll because she would get tired so she was sleeping more than normal. We went skiing on Sunday the 14th, this was the first time that the kids have ever skied. It was great day and the kids had a blast. Isabelle did start to complain of the headache on the way home so we thought it was time to take her in to see what was going on. We went to Children’s Hospital (south campus) to get her checked out. She was not presenting with any sort of infection (no flu, no sinus infection, no fever or strep), they concluded that she probably has a viral infection so obviously my mind started to wonder what was going on, to be honest I did think there was a greater concern over just a simple viral infection. We had a brain MRI planned for the following Thursday as a precaution because we have recently learned that Isabelle does have a genetic mutation that warrants close observations. So we did what we could to keep her headaches at bay until we could get more answers from the brain MRI. We nervously waited over the next few days for the MRI to tell us more as to what was causing the headaches. Thursday was upon us and we started the day just like every other day. Struggling to get the kids out of bed and out the door! We went to Children’s Hospital for the brain MRI and ultrasounds. The ultrasounds went well and nothing of concern there. We prepared for the brain MRI and Isabelle decided to go with a pink lighting for the MRI room, that little girl loves pink…no surprise there! Things were going as planned and toward the end of the imaging Sarah noticed that the technician was on the phone with someone. This obviously prompted a little worry from Sarah given her recent treatment for breast cancer…..motherly instinct that something concerning was going on! They promptly escorted Sarah and Isabelle to another waiting room and indicated that a radiologist needed to look at the image. That is not good! Sarah quickly called me since I was in the waiting room with Michael and said I needed to get back there ASAP! So I nearly kicked down the door trying to get back there, once I made it to Sarah the radiologist informed me that my baby girl had a tumor in her mid-brain. Instantly I couldn’t believe we were going through this again and now with my little girl. I tried to maintain my composure and allow the radiologist to explain what was going on and how this tumor was impacting the flow of her cerebral fluid and blocking the fluid to drain into the 4th ventricle. I felt like I was punched in the stomach yet again…..I was angry, upset, sad, frustrated all at the same time! Start asking why Lord are we going through this yet again??
The doctor could not say with absolute certainty that the tumor was a malignancy or benign so a biopsy would have to be performed to better understand what we are dealing with and additionally they would have to deal with the blockage. So the doctors would have to perform an Endoscopic Third Ventriculostomy (ETV) which in laymen’s terms is a procedure to allow the cerebral fluid to properly drain into the 4th ventricle. This would relieve the pressure buildup (hydrocephalus) that was taking place in her brain. The doctor said it’s a pretty standard procedure and if successful Isabelle would not need shunt. So we were optimistic that this would address the tumor blocking the canal. She would also need a biopsy of the tumor so that added some complexity due to location of the tumor. They would need to access that through the back right side of her head going through her cerebellum. Now let me tell you when neurosurgeon explain this stuff everything seems simple and routine. They have an amazing talent of calming your concerns…..so bless them for this ability to take brain surgery and make it seem normal. These doctors are truly amazing surgeons. The plan was the needle biopsy and (ETV) and possibly one or two night stay in the hospital. Surgery was planned for Friday at 5:30pm so we nervously waited in the hospital for surgery time. Isabelle as in good spirits and enjoying her time in the hospital with the attention she was getting but not happy that should couldn’t eat all day….yeah that kind of pissed her off. Let me tell you what they are many people out there that love us and love Isabelle….so many calls, gifts, stuffed animals, blankets, etc came flooding our way! So the surgery time came and it was planned for 3 in half hours give or take. I can tell you by this point Sarah and I were completely depleted emotionally, physically, and spiritually. In looking back….I wish that I was stronger when they rolled her back for surgery but I just broke down and cried from all the heartache and pain I was feeling! I was so scared for my daughter and that she was having to go through this…..as a parent you want to protect your children from anything bad that can happen! I truly felt completely powerless and for the first time there was nothing I could do to protect her or keep her safe….that hurt more than I can even express! She was in God’s hands and all I could do is keep my faith in him and his plan! Friday was a long night as the surgery started around 5pm and we didn’t get to see her until about 11pm. I want to personally thank my mother Theresa, Sarah’s mom Barbara, Sarah’s sister Britt, my aunt and uncle Sandy and Rich, our friends Brooke, Franny, Jim, and Kathy for being there for us during Belle’s surgery….we were not alone at all in this process!
I think I was creating a path in the carpet from all of my pacing in the waiting room. Everything went well during surgery just a little longer than planned. She did end up getting some bleeding at the biopsy site which can be problematic and also some slight paralysis of her left side of her face and her left arm so they did a quick MRI which they had to resedate her to take. I was kind of freaking out at this point wondering what was going on. The neurosurgeon was relatively ok with the amount of blood and did think it warranted any surgical intervention. He said the paralysis should completely resolve soon. So we were happy that she did well and was out of surgery. Everything seemed to be going as planned…..one night in the hospital maybe two at the most….let the healing begin so we can get Belle home! Well let me tell you what not everything is easy or as we plan it! What was supposed to be a short stay turned into 7 days….yes 7 days in the hospital filled with long nights and stressful moments. The paralysis did completely resolve which was a God sent…..she did experience extreme dizziness, extreme facial swelling on the right side (completely closed her poor little eye), nausea, headaches, and the inability to walk on her own without assistance. Not to drag out our hospital stay…..things did improve a little each day with some setbacks during the process. The neurosurgeons said all of these things can be expected for the surgeries that she received…..well let me tell you what I don’t remember hearing any of those things possibly taking place. I think that they don’t want you to sleep at night when you stay at the hospital between the twin “bed” aka fold out uncomfortable couch they provide (mind you both Sarah and I were sharing that) and constant interruption throughout the night like every 2 hours it was hopeless to get any sleep! Sarah and I were frustrated but rolling with the punches. We just wanted Isabelle to be well enough to be home for the holidays!
I want to take a moment and explain to those of you that have never been to Children’s Hospital PICU….there are many sick kiddos there far worse off than Belle and it gave light to our situation and we wouldn’t help but feel and pray for those hurting far more than us. Life is fragile and every day is a blessing! Give thanks for your blessings every day and appreciate the important things in life! Too often we focus on the wishes and wants in our life rather than the small things that we should be thankful for that we already have….lesson learned for me…I count my blessings every day!
So back to Belle…she was improving and got the thumbs up to go home before Christmas! We made it home by Wednesday and our bed at home never felt so good! Isabelle’s dizziness had resolved and the headaches were getting better (only needing Motrin about every 8 hours). I guess going through the cerebellum with a needle is quite easy but very disruptive to brain function so it causes swelling and disrupts balance and other things so it just takes a little with for things to reset if you may. It felt kind of like we had a newborn again as we had to wait on her hand and foot since she was unable to walk on her own and she did have difficulties feeding herself certain foods that required more hand skills. But praise the Lord things were improving and getting better every day and Christmas was great and we were so happy to be home!
The only thing left lingering in our minds was the biopsy results and what the plan was to address the tumor. We asked the oncologist to wait until after the holidays to discuss the results so we had an appointment for Monday the 28th to discuss that. I can tell you as each day neared I was more nervous and sleeping a little less. I was praying constantly for God just give Sarah and I peace of mind and to continue to trust in his plan…..sometimes we stand in the way of that….I’m continuing to learn to let go and let God take the lead! I’m a work in progress.....Thank goodness God is patient!
So December 28th came and we were hopefully but cautiously optimistic about the results. Something that I have learned since dealing with Sarah and her journey with her breast cancer. Belle came with us so that the oncologist could do an examination on her to see her progress since surgery. So the results were not completely what we wanted (which was a benign tumor) but to be honest that is what we expected. Belle has a grade II Glioma Astrocytoma…which is best described as a low grade cancerous tumor…..this certainly gives us hope of successful treatment options.
So what’s the plan…..well its long one but we will fight every day and be there to support Belle to get through this journey! She will require a full year of chemotherapy for all of 2016. She will start this process on January 4th…..with the surgical placement of an access port in her chest. Given the sheer volume of chemotherapy that she will receive doing this intravenously is not an option so a port is the best option and with be less painful for her over the long run. The port will be placed under the skin so she will be able to go back to her swimming class…..yeah for Belle! I just love watching her go to swimming class she see that smile on her face! I take the time to really watch her and see her joy…I often times see other parents sitting there on their phones texting or looking at Facebook and missing what is right in front of them and not being in the MOMENT! I share this small gift with you other parents out there….don’t get caught up in the hustle and bustle of life but rather just be in the moment with your kiddos whenever you can…..
She started the chemo regiment in January 2016 and finished November 22rd, 2016. The regiment was three Fridays in row of chemo and then one off and then start the cycle over for almsot a full year. She received a fairly lite dose of chemo if there is such one and as a result will most likely not lose her hair, it casued some thinning a little but it didn't fall out which is great! As always with chemo there were some side effects most commonly nausea and constipation but we did our best with available medications to combat those side effects. Otherwise she a very strong and brave little girl and is taking this situation with strides and still laughing and being a normal kid! I just want her to be a kid and not worry about these things….allow mom and dad to worry about it!
So that’s where we are right now…..just taking one day at time! Still trying to heal from Sarah’s journey and finishing up with Isabelle's journey.
Fast forward 16 months since her diagnosis and as of April 7th 2017 Isabelle's MRI showed "No Evidence of Disease" which is a God delivered miracle! She will contine to have routine MRI's every 3 months. WE are so blessed in so many different ways! This is the first time in 2 years that we can say the McAllister Family shows evidence of cancer! Amen...
I know that God has plan even though I can’t see it right now….I have to put my full faith and trust in him that he will care for our Belle! Life isn’t always easy or how we planned it…..I have let go of the anger! That does me no good and it doesn’t help my family! Instead I have replaced it with hope, joy, thankfulness, and faith! I know with that we will get through this journey too.
Michael is doing well and of course worried about his little sister. We are trying to maintain as much normalcy for him as possible. I know it was difficult to see his mother go through cancer treatment and now having to see his little sister do the same can be difficult to comprehend. I want to thank everyone out there that is sending love, support, and prayers our way! I can’t say enough about your resilience to continue to help during these tough times! God bless you all and praise him in his glory! We will continue to keep Isabelle's blog updated www.isabelles2016journey.blogspot.com and let you know of her progress….please pray for her to continue to heal! As always if anyone out there is aware of new innovative treatments please let us know, its always good to know about other treatment options over chemotherapy to discuss with her oncologist!
We are looking for funding that will help support the medical expenses (routine MRI scans, ultrasounds, etc) and cannabis oils that Sarah and Isabelle will be taking for the rest of their lives. Its a miracle medicine and we truly think it has great potential to help keep the cancer from coming back. These things are not cheap and carry a lot of cost. We anticipate approximately $14,000 annually for routine scans/other traditional medical expenses and the cost of the cannabis oils. The family uses about 450mg of Charlotte’s Web CBD oils per day and Isabelle does take dosages of THC, which is necessary combination. So the monthly cost for the cannabis oils is approximately $1,000. As you can probably imagine all the cannabis oil costs are after taxes and cannot be paid for with HSA accounts since our federal government still has cannabis listed as an illegal drug on the federal level. The other costs are for the deductibles from our insurance plans. Any and all donations are much appreciated.
Our campaign goal is based upon our yearly expenses and to help cover the cost for the years to come.....hoping that cancer will not pop back up and we can cut back on some of the dosing and frequency of scans and MRIs...and perhaps a cure/management regiment for cancer that keeps it in check! Hopes and prayers for that!
Thank you,
Mac, Sarah, Michael and Isabelle
Things began on 12/10/15 and Isabelle was complaining of headaches. Initially we thought she was dealing with a sinus infection or something else that was just causing her to feel a little under the weather. She seemed to feel a little better and then the headaches would start back up. She was in good spirits but the headaches were certainly taking a toll because she would get tired so she was sleeping more than normal. We went skiing on Sunday the 14th, this was the first time that the kids have ever skied. It was great day and the kids had a blast. Isabelle did start to complain of the headache on the way home so we thought it was time to take her in to see what was going on. We went to Children’s Hospital (south campus) to get her checked out. She was not presenting with any sort of infection (no flu, no sinus infection, no fever or strep), they concluded that she probably has a viral infection so obviously my mind started to wonder what was going on, to be honest I did think there was a greater concern over just a simple viral infection. We had a brain MRI planned for the following Thursday as a precaution because we have recently learned that Isabelle does have a genetic mutation that warrants close observations. So we did what we could to keep her headaches at bay until we could get more answers from the brain MRI. We nervously waited over the next few days for the MRI to tell us more as to what was causing the headaches. Thursday was upon us and we started the day just like every other day. Struggling to get the kids out of bed and out the door! We went to Children’s Hospital for the brain MRI and ultrasounds. The ultrasounds went well and nothing of concern there. We prepared for the brain MRI and Isabelle decided to go with a pink lighting for the MRI room, that little girl loves pink…no surprise there! Things were going as planned and toward the end of the imaging Sarah noticed that the technician was on the phone with someone. This obviously prompted a little worry from Sarah given her recent treatment for breast cancer…..motherly instinct that something concerning was going on! They promptly escorted Sarah and Isabelle to another waiting room and indicated that a radiologist needed to look at the image. That is not good! Sarah quickly called me since I was in the waiting room with Michael and said I needed to get back there ASAP! So I nearly kicked down the door trying to get back there, once I made it to Sarah the radiologist informed me that my baby girl had a tumor in her mid-brain. Instantly I couldn’t believe we were going through this again and now with my little girl. I tried to maintain my composure and allow the radiologist to explain what was going on and how this tumor was impacting the flow of her cerebral fluid and blocking the fluid to drain into the 4th ventricle. I felt like I was punched in the stomach yet again…..I was angry, upset, sad, frustrated all at the same time! Start asking why Lord are we going through this yet again??
The doctor could not say with absolute certainty that the tumor was a malignancy or benign so a biopsy would have to be performed to better understand what we are dealing with and additionally they would have to deal with the blockage. So the doctors would have to perform an Endoscopic Third Ventriculostomy (ETV) which in laymen’s terms is a procedure to allow the cerebral fluid to properly drain into the 4th ventricle. This would relieve the pressure buildup (hydrocephalus) that was taking place in her brain. The doctor said it’s a pretty standard procedure and if successful Isabelle would not need shunt. So we were optimistic that this would address the tumor blocking the canal. She would also need a biopsy of the tumor so that added some complexity due to location of the tumor. They would need to access that through the back right side of her head going through her cerebellum. Now let me tell you when neurosurgeon explain this stuff everything seems simple and routine. They have an amazing talent of calming your concerns…..so bless them for this ability to take brain surgery and make it seem normal. These doctors are truly amazing surgeons. The plan was the needle biopsy and (ETV) and possibly one or two night stay in the hospital. Surgery was planned for Friday at 5:30pm so we nervously waited in the hospital for surgery time. Isabelle as in good spirits and enjoying her time in the hospital with the attention she was getting but not happy that should couldn’t eat all day….yeah that kind of pissed her off. Let me tell you what they are many people out there that love us and love Isabelle….so many calls, gifts, stuffed animals, blankets, etc came flooding our way! So the surgery time came and it was planned for 3 in half hours give or take. I can tell you by this point Sarah and I were completely depleted emotionally, physically, and spiritually. In looking back….I wish that I was stronger when they rolled her back for surgery but I just broke down and cried from all the heartache and pain I was feeling! I was so scared for my daughter and that she was having to go through this…..as a parent you want to protect your children from anything bad that can happen! I truly felt completely powerless and for the first time there was nothing I could do to protect her or keep her safe….that hurt more than I can even express! She was in God’s hands and all I could do is keep my faith in him and his plan! Friday was a long night as the surgery started around 5pm and we didn’t get to see her until about 11pm. I want to personally thank my mother Theresa, Sarah’s mom Barbara, Sarah’s sister Britt, my aunt and uncle Sandy and Rich, our friends Brooke, Franny, Jim, and Kathy for being there for us during Belle’s surgery….we were not alone at all in this process!
I think I was creating a path in the carpet from all of my pacing in the waiting room. Everything went well during surgery just a little longer than planned. She did end up getting some bleeding at the biopsy site which can be problematic and also some slight paralysis of her left side of her face and her left arm so they did a quick MRI which they had to resedate her to take. I was kind of freaking out at this point wondering what was going on. The neurosurgeon was relatively ok with the amount of blood and did think it warranted any surgical intervention. He said the paralysis should completely resolve soon. So we were happy that she did well and was out of surgery. Everything seemed to be going as planned…..one night in the hospital maybe two at the most….let the healing begin so we can get Belle home! Well let me tell you what not everything is easy or as we plan it! What was supposed to be a short stay turned into 7 days….yes 7 days in the hospital filled with long nights and stressful moments. The paralysis did completely resolve which was a God sent…..she did experience extreme dizziness, extreme facial swelling on the right side (completely closed her poor little eye), nausea, headaches, and the inability to walk on her own without assistance. Not to drag out our hospital stay…..things did improve a little each day with some setbacks during the process. The neurosurgeons said all of these things can be expected for the surgeries that she received…..well let me tell you what I don’t remember hearing any of those things possibly taking place. I think that they don’t want you to sleep at night when you stay at the hospital between the twin “bed” aka fold out uncomfortable couch they provide (mind you both Sarah and I were sharing that) and constant interruption throughout the night like every 2 hours it was hopeless to get any sleep! Sarah and I were frustrated but rolling with the punches. We just wanted Isabelle to be well enough to be home for the holidays!
I want to take a moment and explain to those of you that have never been to Children’s Hospital PICU….there are many sick kiddos there far worse off than Belle and it gave light to our situation and we wouldn’t help but feel and pray for those hurting far more than us. Life is fragile and every day is a blessing! Give thanks for your blessings every day and appreciate the important things in life! Too often we focus on the wishes and wants in our life rather than the small things that we should be thankful for that we already have….lesson learned for me…I count my blessings every day!
So back to Belle…she was improving and got the thumbs up to go home before Christmas! We made it home by Wednesday and our bed at home never felt so good! Isabelle’s dizziness had resolved and the headaches were getting better (only needing Motrin about every 8 hours). I guess going through the cerebellum with a needle is quite easy but very disruptive to brain function so it causes swelling and disrupts balance and other things so it just takes a little with for things to reset if you may. It felt kind of like we had a newborn again as we had to wait on her hand and foot since she was unable to walk on her own and she did have difficulties feeding herself certain foods that required more hand skills. But praise the Lord things were improving and getting better every day and Christmas was great and we were so happy to be home!
The only thing left lingering in our minds was the biopsy results and what the plan was to address the tumor. We asked the oncologist to wait until after the holidays to discuss the results so we had an appointment for Monday the 28th to discuss that. I can tell you as each day neared I was more nervous and sleeping a little less. I was praying constantly for God just give Sarah and I peace of mind and to continue to trust in his plan…..sometimes we stand in the way of that….I’m continuing to learn to let go and let God take the lead! I’m a work in progress.....Thank goodness God is patient!
So December 28th came and we were hopefully but cautiously optimistic about the results. Something that I have learned since dealing with Sarah and her journey with her breast cancer. Belle came with us so that the oncologist could do an examination on her to see her progress since surgery. So the results were not completely what we wanted (which was a benign tumor) but to be honest that is what we expected. Belle has a grade II Glioma Astrocytoma…which is best described as a low grade cancerous tumor…..this certainly gives us hope of successful treatment options.
So what’s the plan…..well its long one but we will fight every day and be there to support Belle to get through this journey! She will require a full year of chemotherapy for all of 2016. She will start this process on January 4th…..with the surgical placement of an access port in her chest. Given the sheer volume of chemotherapy that she will receive doing this intravenously is not an option so a port is the best option and with be less painful for her over the long run. The port will be placed under the skin so she will be able to go back to her swimming class…..yeah for Belle! I just love watching her go to swimming class she see that smile on her face! I take the time to really watch her and see her joy…I often times see other parents sitting there on their phones texting or looking at Facebook and missing what is right in front of them and not being in the MOMENT! I share this small gift with you other parents out there….don’t get caught up in the hustle and bustle of life but rather just be in the moment with your kiddos whenever you can…..
She started the chemo regiment in January 2016 and finished November 22rd, 2016. The regiment was three Fridays in row of chemo and then one off and then start the cycle over for almsot a full year. She received a fairly lite dose of chemo if there is such one and as a result will most likely not lose her hair, it casued some thinning a little but it didn't fall out which is great! As always with chemo there were some side effects most commonly nausea and constipation but we did our best with available medications to combat those side effects. Otherwise she a very strong and brave little girl and is taking this situation with strides and still laughing and being a normal kid! I just want her to be a kid and not worry about these things….allow mom and dad to worry about it!
So that’s where we are right now…..just taking one day at time! Still trying to heal from Sarah’s journey and finishing up with Isabelle's journey.
Fast forward 16 months since her diagnosis and as of April 7th 2017 Isabelle's MRI showed "No Evidence of Disease" which is a God delivered miracle! She will contine to have routine MRI's every 3 months. WE are so blessed in so many different ways! This is the first time in 2 years that we can say the McAllister Family shows evidence of cancer! Amen...
I know that God has plan even though I can’t see it right now….I have to put my full faith and trust in him that he will care for our Belle! Life isn’t always easy or how we planned it…..I have let go of the anger! That does me no good and it doesn’t help my family! Instead I have replaced it with hope, joy, thankfulness, and faith! I know with that we will get through this journey too.
Michael is doing well and of course worried about his little sister. We are trying to maintain as much normalcy for him as possible. I know it was difficult to see his mother go through cancer treatment and now having to see his little sister do the same can be difficult to comprehend. I want to thank everyone out there that is sending love, support, and prayers our way! I can’t say enough about your resilience to continue to help during these tough times! God bless you all and praise him in his glory! We will continue to keep Isabelle's blog updated www.isabelles2016journey.blogspot.com and let you know of her progress….please pray for her to continue to heal! As always if anyone out there is aware of new innovative treatments please let us know, its always good to know about other treatment options over chemotherapy to discuss with her oncologist!
We are looking for funding that will help support the medical expenses (routine MRI scans, ultrasounds, etc) and cannabis oils that Sarah and Isabelle will be taking for the rest of their lives. Its a miracle medicine and we truly think it has great potential to help keep the cancer from coming back. These things are not cheap and carry a lot of cost. We anticipate approximately $14,000 annually for routine scans/other traditional medical expenses and the cost of the cannabis oils. The family uses about 450mg of Charlotte’s Web CBD oils per day and Isabelle does take dosages of THC, which is necessary combination. So the monthly cost for the cannabis oils is approximately $1,000. As you can probably imagine all the cannabis oil costs are after taxes and cannot be paid for with HSA accounts since our federal government still has cannabis listed as an illegal drug on the federal level. The other costs are for the deductibles from our insurance plans. Any and all donations are much appreciated.
Our campaign goal is based upon our yearly expenses and to help cover the cost for the years to come.....hoping that cancer will not pop back up and we can cut back on some of the dosing and frequency of scans and MRIs...and perhaps a cure/management regiment for cancer that keeps it in check! Hopes and prayers for that!
Thank you,
Mac, Sarah, Michael and Isabelle
Organizer
Sarah Hauben McAllister
Organizer
Gateway, CO
