Kyle Spriggs Journey
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Kyle was 7 years old when diagnosed with a brain tumor, he successfully made it through surgery and chemo making the tumor dormant. Kyle is now 14 and recently the tumor has started to grow. Kyle is going to undergo 30 rounds of treatment, 5 days a week not including Holiday's until he completes his treatment. His treatments will be in Dallas resulting in Kyle and his mom having to relocate to Dallas for the duration of his treatment. Kyles mom will be missing several weeks of work. We are doing this fundraiser to help with medical expenses, travel expenses, lodging expenses and the loss of wages. Please read Kyle's full Journey in the blog below.
Kyle’s Journey
November 4, 2009 at 7:20am
It all started when we took the kids for routine eye exams at the end of August 2007. Chris, Christina and myself all wear glasses and Kyle was saying he hoped he needed glasses too because the rest of our family had them. Kyle kept giving the Optometrist off the wall responses and we thought he was just trying to get the doctor to say he needed glasses. Doctor McFerron turned and looked at us and said gently “I don’t believe he is faking this”. I could feel tears building up as he ran a few more tests. He then informed us that Kyle was completely blind in his left eye!
Kyle later told me that he thought it was normal because he says he could never see out of his left eye. He has adapted so well that even now knowing that he is blind in that eye, I can’t tell! The eye doctor referred us to a Pediatric Ophthalmologist (PO). His appointment was September 12, 2007. The PO sent us for an MRI Brain Scan. The appt was the following Sunday (which freaked me out because who has an MRI on Sunday?).
The following week I started calling the doctors offices and no one would talk to me about the MRI. They insisted we had to WAIT until his appt w/ the PO, next month!). So I had some stern words with a nurse in Kyle’s pediatrician’s office who felt bad and eventually just blurted out that Kyle had a tumor, but she couldn't read the results due to policy. She told me to be persistent and tell the receptionist at the PO’s office to have the PO contact me immediately that I knew about the tumor. I did and he called me back in about 15 min.
He referred us to a neurosurgeon in Tulsa, OK. We had an appointment within the week. It was at that appointment we were able to see the tumor for the first time. It was the size of a golf ball! The neurosurgeon said that he could perform the surgery but that he wasn't confident he would be able to do the surgery as successfully as a pediatric neurosurgeon. So he gave us some options. We needed to decide ASAP.
We asked the Dr. if it were his child, who would he feel was the best surgeon to take on this major surgery. He said no question Neurosurgeons for Children in Dallas, TX at Children’s Medical Center. It is a 6 hour drive but well worth it to know our little boy is in the best hands. We left his office with a disk containing Kyle’s MRI. I sent it FedEx to Dr. Sacco (his soon to be neurosurgeon). He called right away and made an appointment 2 weeks out. By this time we were monitoring Kyle’s vision closely and noticed that he was losing peripheral vision in his right eye too! We contacted the doctor’s office and the nurse told us we needed to get him to the ER in Dallas right away, this was Friday.
We were in the process of moving back into our home (we were displaced for 3months due to a major flood) so we finished up quickly as possible that way if he had to have emergency surgery he would be comfortable when he got home. We left for Dallas on Sunday morning September 30th he was admitted to the hospital through the ER. They did a CAT scan. His tumor was inflamed, putting pressure on his right optical nerve, causing the vision changes in his right eye. The doctors put him on steroids to reduce the inflammation.
In the morning he had another MRI. This was how they were going to be able to “practice” surgery before they went in for real. It kind of works like GPS. Kyle was released to go home after 3days and instructed to remain on the steroids. We had to be back in Dallas Oct.9, 2007 for his regular appointment to discuss options and risks with the surgery. It was a scary day. Surgery was set up for Oct.16, 2007. We had to be at the hospital on the 15th for pre-op. Kyle has a difficult time with needles so the whole floor of the hospital could probably hear him freaking out about getting a finger poke! The day of surgery arrived and I was going out of my mind! It took 9 hours! But we got hourly updates from the operating room. He remained stable throughout the entire procedure.
We spent the next day in ICU while he was coming down from the anesthesia. He had another MRI to see how much of the tumor was still remaining. They were able to remove 75% of it with out causing damage to the surrounding areas of his brain. The pathology came back that it is a grade 1 which is classified as benign! What a relief! They explained that even though it is benign it is still growing at a very slow rate. This slow growing tumor is called a Pilocytic Astrocytoma a.k.a. Optic Chiasm Hypothalmic Glioma (either way it is still a mouthful).
We set up arrangements for chemo to begin Nov.2, 2007 he had surgery that morning to put a port in his chest, which actually ended up being placed on his ribs. He got his 1st chemo that afternoon. He tolerated it fairly well considering the possibilities. He was mostly tired and a little nauseous. He had chemo again 12-4-07 this time he had a little more nausea. He will have chemo every 4 weeks for the next 15-18 months. He is doing very well now.
Update 12-14-07: Had to take Kyle to the ER today. He had hives all over his body! Even on his eyelids and the palms of his hands! He was also experiencing irritation in his throat. He was seen quickly and the doctors decided that one of his medications called Bactrim was behind the reaction. He was taking the Bactrim to prevent pneumocystis pneumonia (a common but potentially deadly disease for chemo patients) his Neuro Oncologist said to discontinue the Bactrim and a different medicine was prescribed to replace it.
Update 1-3-08: Kyle had chemo yesterday. He is having a hard time with it 2day. It is so hard to watch him go through this and not be able to take his pain away.
Update 1-27-08: Kyle began running a high fever and was vomiting today. We took him to the ER, blood counts were ok, and FLU test came back negative. They gave him strong antibiotics called Rosefin through his port and some IV fluids. And after about 6 hours they released us to go home.
Update 1-30-08: Kyle had chemo and an MRI yesterday and it showed the chemo has shrunk the remaining tumor about 20%!!! He is resting now while he recovers from yesterday’s chemo treatment. He is still feeling bad from his ER visit a few days ago.
Update 2-10-08: Kyle is running a high fever again and has been vomiting since he had his last chemo, so back to the ER we go. Flu test negative again, blood counts are within acceptable range. More Rosefin through his port and IV fluids. He has lost 8lbs since 1-30-08. I am so scared and exhausted, cant sleep because he has been so sick. And yet with as sick as he is he still lifts me up and reminds me of what is important. I was sitting with him on the bathroom floor (again) and when he started vomiting again I just broke down crying, the pain of watching your child go through this hell is so much worse than words can say. As I wiped is face he looked up at me and said “Mom don’t be sad, its ok that the chemo makes me sick, it’s working and my tumor is shrinking, its worth it” In that moment he was so weak and sick and yet here he was cheering ME up.
Update 2-21-08: Kyle’s blood counts are very low this week and so his doctor had ordered for him to have a blood transfusion! This was something we had not been prepared for. There is so much information to take in. Kyle is having a hard time understanding why he needs to “borrow” someone else’s blood, he said “don’t they need it?”
Update 2-26-08: Kyle had chemo today. He has developed an allergy to one of the chemo drugs called Carboplaitin. They treated him with IV Benadryl and a steroid called Solumedrol, he promptly fell asleep (due to the Benadryl) and was able to finish up the full round of chemo without any more problems. His doctor said that this reaction was normal for most kids and informed us that it was likely to get worse with each treatment so they will have to pre-treat him for the allergy before chemo from now on.
Update 3-11-08: Kyle’s blood counts were low again today so we are going back to the hospital for another blood transfusion.
Update 3-25-08: This week so far has been a whirlwind!!! It started out like our regular monthly trip to Dallas. We left home Monday on our 6 hour trip, stayed at the Ronald McDonald House, got up early Tuesday (the day before Kyle’s 8th birthday) and ate at Denny’s before his treatment, just like always, and then it was flipped upside down shaken and stirred!!!
We had been inside Denny’s for about 30 minutes and when we left we found our car window busted out and Kyle’s backpack stolen. The car was parked right outside the windows at Denny’s and along a busy street. We thought it was a safe place to park. Apparently there is no such thing. No one saw anything or rather no one has come forward with any info. Kyle’s backpack had ALL of his medication (8 bottles of it), a binder that I kept all of his blood work and medical information was also in the bag along with his homework and books, ALL of his video games his Nintendo DS & PSP the things he used to keep himself distracted during the hours of getting chemo knowing that is was going to make him sick.
We figured we are in a big city the police are going to take the report and that will be it, but they proved us wrong. They went above and beyond the call of duty and brought our little boy a smile. They came to visit him in the hospital just a few hours later and gave him a new PSP, several video games and movies, as well as money to replace the medicine and window. Even now I sit here in tears thanks to their generosity. They touched my heart because that morning Kyle was so upset about everything that had been taken from him and they brought his smile back to him. These officers are truly are angels and we will remember them always! The Dallas area is lucky to have them!
The news stations gave this quite a bit of coverage, I am glad the officers got the public kudos they deserve; too many times the news is focused on the few bad apples when there are officers like these making a difference! I used to have news links here but they have all expired. :( In addition to all the chaos this week Kyle’s blood counts were again very low and so he had to have another blood transfusion immediately following his chemo. The Ronald McDonald House gave Kyle a brand new bike for his birthday! He loves it!!
Update 4-15-08: Blood counts low again; here we go back to the hospital for more blood.
Update 4-22-08: Kyle had chemo and an MRI today. The tumor has showed minimal change in composition and no change in size.
Update 5-13-08: Blood counts are low yet again; here we go back to the hospital for another transfusion. I have been reading up on the research done on the drug called Dapsone that Kyle has been taking to replace the Bactrim that he had an allergic reaction to. The studies had showed in rare cases patients had experienced serious anemia. I called his Neuro Oncologist and he suggested we discontinue the Dapsone and at his next appointment for chemo we will try a different drug called Pentamadine.
Update 5-27-08: Kyle had chemo today and he started on his new drug called Pentamadine. He was only going have to have this treatment every 28days. He had to sit in a booth that filled the air with the drug. After a very short time in the booth he began experiencing severe bronchial spasms which made it near impossible to breathe. Kyle was so very scared and had a panic attack! The doctor stopped the treatment and gave Kyle a breathing treatment to treat him for the panic induced asthma attack. After talking with his doctor we decided not to force Kyle to have that horrifying treatment again. Thankfully he won’t have to resume a different regimen for 28days so that will give his doctor time to come up with a new plan of action.
Update 6-24-08: Kyle was scheduled for chemo today but his platelets are too low so we had to reschedule for next week. Since we were already in Dallas we went and visited our friends at the Dallas Police Department and spent the day with them. We got to see the police headquarters and a room that they call Big Brother. The room is filled with TVs showing all of the security cameras from all over the city! AMAZING!
We got to meet Police Chief Kunkle. He presented Kyle with a plaque and named him an honorary Dallas Police Officer. We got to see the police helicopter and motorcycles as well as their police horses. Kyle’s favorite part of the day was when we went to the Police Academy and got to go for a ride in the squad car with sirens blaring as we raced around the high speed training track! He kept asking to go again and again. He told a news reporter “I wanna go again! I wanna go until I barf!” silly boy. It was a great day! (this comment made it into USA Today's Quote of the Day section). The men and women of the DPD have been nothing short of amazing. Love them.
Update 7-3-08: Kyle had chemo 2day and his doctor came up with the new plan to prevent pneumocystis pneumonia. The drug is called Mepron, it comes in liquid form and Kyle is not too thrilled about it. Chemo has made his sense of taste very sensitive and so when we give him the new medicine we have to have a peppermint ready so he doesn't gag and vomit it back up. He is a trooper though, because he knows the alternative is to go back to the booth of doom!
Update 7-20-08: Kyle has been so very sick the last 3days. We have been in the hospital because of high fever. He got Rosefin in his port all 3 days as well as IV fluids. They ran all sorts of tests and still they have no idea what is causing the fevers. His platelets are dangerously low as well and he has bruises all over just from holding him and spots called petechiae (broken blood vessels) over his entire body because of it.
Update 7-22-08: Kyle woke up today feeling good as new!
Update 8-5-08: Kyle had an MRI yesterday we got the results today. The tumor is smaller!!! We are relieved the treatments are still having an impact on the tumor. He had chemo today and the allergy has gotten worse. We had to pause the treatment because he was having a hard time breathing and broke out with hives.
Update 8-30-08: Kyle has been running fever and very sick again for the last 3days. Yesterday we had a terrifying experience at the hospital! There was a nurse that had never cared for Kyle before and was not familiar with his port. I don’t think she was familiar with being a nurse either! For starters she brought the wrong needle to access his port; his is supposed to be a .75 inch, 25 gauge and this “nurse” brings in a 1.5 inch needle!
She claimed they didn’t have the right size in stock! So she accessed his port but couldn’t get it to work properly, she then proceeds to say that it is not in all the way and began putting all her upper body weight on him trying to force it in!
The mom in me went crazy to see my baby boy hurting and screaming in agony I don’t know what came over me I shoved her off of him and ordered her to leave the room, get the doctor and told her to stay out of my sight! How can anyone be called a nurse and be so ignorant? By this time Kyle was drawing a crowd because of the fear in his screams.
Finally I saw a nurse that had cared for Kyle before and I begged him to help. He agreed, and removed the needle only to find that it was BENT! He went to retrieve the correct size needle and gave me time to calm Kyle down. A lady from the gift shop came and gave him a teddy bear and wished him a speedy recovery. When the good nurse came back he accessed Kyle’s port without any further issue. Kyle finished up his medication and we left the hospital. Today he ran a fever again and I made the decision to drive to a different hospital rather than put Kyle in danger with that ignorant nurse again. The commute is 30 minutes longer but he was treated very well. They did an x-ray of his chest because he was having difficulty breathing after the incident yesterday. His ribs were badly bruised (his platelets were low) but thankfully not broken. He is starting to feel better now.
Update 9-17-08: Kyle had chemo yesterday………. sort of. His counts were good and the day started off like usual. Got his port accessed, saw the doctor, got started on his fluids to pre-hydrate, ate lunch (he had pizza), got Zofran (anti-nausea), got Solumedrol (steroid for his allergy to the chemo) got Benadryl (again for the allergy), got chemo drug 1 Vincristine, all went normally up to this point and then he gets started on the chemo drug 2 Carboplaitin 54 mL he had only gotten about 4 mL when he experienced a severe allergic reaction.
He had difficulty breathing and hives all over and he began vomiting, he was still groggy from the Benadryl so he was panicked because of the breathing difficulty. The nurse came in and shut off the IV pump and then the doctor came in and sat with us for almost an hour monitoring Kyle and discussing his treatment plan. What it comes down to is that his allergic reaction is progressing and with every dose of chemo it becomes more severe. He felt it was unsafe to continue with this course of therapy (we agreed) because not only would the reactions become worse but also the effect on his blood counts as well as his illness after treatment. At this point Kyle is no longer going to be continuing his chemotherapy. The doctors will monitor his tumor by MRI every 3 months to be sure it stays dormant.
If there are any changes we will discuss further treatment options at that time if it should it be radiation or another form of chemo. If we go 6 months without the tumor experiencing growth his port will be removed. The doctor seemed optimistic, telling us there are studies that show kids who develop allergies to the Carboplaitin, and their tumors seem to stay dormant longer. Needless to say this is something that we will have to watch for the rest of our lives. We also had an appointment with the Ophthalmologist. The vision he does have is 20/20 but they told us his vision that has been lost cannot be regained. He has no right side peripheral in his right eye and no vision at all in his left eye.
Amazing thing about this is that people don’t know (unless they are told) because he has adapted so well. We will have our next MRI in November.
Update 10-18-2008: Kyle had another bout with fevers again the last 2 days. Back to the hospital again for Rosefin in his port both days. He is feeling much better tonight.
Update 11-6-2008: Kyle had his MRI last night and we saw the doctors today. The tumor has had no sign of change since his last MRI, which is what we want to see. The doctor is very happy with where we are at this point. His next MRI will be the 1st week of February.
This trip was a special one! After his MRI last night, Kyle met Officer Kattner and his wife Sophia and their 2 sons and grandson. Kyle had a great time. I will post pics of that visit when I get copies from Sophia (I thought I left my camera at home…but I later found it). Then today at his doctors appointment he got another surprise! He got his autographed hat from Caps For Kids! It was signed by Tommy Morello and is a hat that Tommy has worn at several of his shows! Tommy also hand wrote him a letter and sent him an autographed copy of his new CD!!!
After his appointment we went back to the Ronald McDonald House and Sean (the Officer that sat in the patrol car with Kyle after we got robbed in March) came to visit us. He and Kyle assembled a helicopter erector set and then played air hockey. Kyle beat him 3 times in a row and then took pity on him and let him win a match. ;)
After Sean left we went to visit more of our friends…..more like family at the northwest police station. They gave us an amazing framed characture portrait of our family with Officers Passmore, Knoble, & Neeley to remind us of our day with the Dallas PD back in June. It had signatures from several of the officers at the station.
We all love it and plan to hang it in the front room of our house so everyone can see it! They also gave us a few early Christmas cards with some money for the kids to spend and to help with our travel expenses. We feel so incredibly lucky to have them as a part of our extended family. We truly love all of them for how wonderful they are, and how they have supported us throughout Kyle’s treatments. They have been a tremendous source of strength and honestly I can’t imagine life with out them.
Update 11-22-2008: Kyle ran a fever for a brief time today so we had to go to the hospital for some more Rosefin though his port.
Update 12-21-2008: It seems Kyle is making this a monthly thing to run a fever this is the 4th month in a row we have had to go to the hospital because of fever to get Rosefin in his port.
Update 2-5-09: Kyle had an MRI yesterday. We saw the doctor today and he told us the tumor is still dormant The plan is to have his port removed in May, after his MRI, if the tumor has remained the same.
Update 4-6-2008: Kyle had a little accident today and had to get 4 stitches in his forehead. He walked into a brick column that was just outside of his line of sight.
Update 4-13-2008: Kyle got his stitches out today! Doctor said it is healing nicely and shouldn't leave much of a scar. Not that a tiny scar would even be noticed when compared to the one that goes all the way across the top of his head from one ear almost all the way to the other. Kyle is very proud of his scar.
Update 5-13-09: Kyle’s MRI came back and the tumor is smaller and with this good news the doctors have decided to remove his port Kyle is stoked! He had surgery this morning to get the port and in less than an hour he was in recovery eating popsicles.
Update 9-16-09: Kyle had another MRI 2day. The tumor is stable and has had no change since his last MRI.
Update 11-2-09: Kyle had an eye appointment 2day with the specialist, his visual field has not changed, but he will now have Rx glassed as his vision is weakened slightly in his good eye. His doctor says it is nothing to be alarmed about since the rest of us wear glasses too. His next MRI will be the week before Christmas.
Update 12-17-09: Kyle had yet another MRI yesterday. We got the results back today and the tumor is remaining stable and his follow up appointments have been spaced to every 6months instead of every 3months. As always thank you for all of your prayers.
Update 6-2010: Kyle had his regular MRI/Clinic followup again. All is well tumor is still stable =-)
Update 1-2011: YAY!!! MRI shows everything still stable!!!!! Best Christmas present a mom could ask for
Update 6-2011: MRI shows all is well. No vision or tumor changes!!!! Kyle graduated 5th grade last month and received the Student of the Year award (along with many other achievement awards)!!! He will be starting Middle school in August. We feel so lucky to have survived his diagnosis and watch him blow away all the obstacles that have tried to set him back! Next follow-up in December.
Update 12-2011: Everything is still stable. Doc says we will discuss spreading follow-up appointments to once a year at his May 2012 appointment. I am not sure how I feel about this. I think having the peace of mind every 6 months is what keeps me almost sane. This time around Kyle decided to participate in a research study to help better understand the after effects of chemo vs. chemo & radiation on kids. They took 6 vials of blood and did a Dexa scan (he had to fast for 12 hours). Kyle made the decision to take part in the study on his own. We are very proud of him. He hates pokes. When I told him about it and what they would be doing to him all he asked was, "Will this help them to help other kids in the future?" I told him yes and he said "ok, I'll do it.". He didn't feel like he needed to think about it at all. All that mattered to him is that he had the chance to make a difference for someone else. Moments like these assure me that we are doing a good job as parents. We are so proud of both of our kids!
Update 5-2012: This MRI shows tumor has grown slightly. We will now be going back for a follow up MRI's every 3 months to keep a closer eye on it. This is not a life threatening change, but could have a negative impact on what little vision he still has left if it continues to grow.
Update 9-2012: MRI shows that the tumor has once again stabilized. Next appt in 6 months. Visual fields are stable as well.
Update 4-2013: MRI shows the tumor remains stable. No change in visual fields. :)
Update 10-2013: Kyle has been experiencing horrific headaches, so we had to make an unplanned trip to Dallas for a checkup. He did not have an MRI at this visit, but he did see Neurologist, Doctor Owens. HE was diagnosed with migraines (something he gets from me, unfortunately).
Kyle will begin a daily regimen of migraine medication for the next 6 months, then be weaned off. Doctor also prescribed a pain med for breakthrough migraines.
Update 2-2014: MRI shows the tumor is still stable. Visual fields are also good. Kyle has not had migraines since starting his meds last October, so Doctor Owens said we would wean him off after his visit to Maryland this summer. Doctor Bowers is please with Kyle's current stability and as a result has decided to go to yearly checkups. Next visit scheduled for December.
Update 10-2014: Kyle had begun having visual problems and the migraines have returned with a vengeance, so we made an unplanned trip top Dallas for a checkup. We received heartbreaking news that the MRI shows 2mm of growth. Because of this, Kyle will be starting Radiation Therapy. He will have 30 rounds of radiation, to be administered daily for 5 days a week. The growth is not responsible for the migraines or the vision changes, his fields are (thankfully) stable at this time. He has resumed taking his migraine medication.
I will be taking a leave of abscence from work so Kyle and I can live in Dallas for the duration of his treatments. Not sure how we will afford it, but we have to do what is best for Kyle.
We will (hopefully, if they have room) be staying at the Ronald McDonald House... We will be there through the holidays, which was a pretty sad moment for Kyle at first, because he wants nothing more than to be able to spend time with our family (and extended family) and his girlfriend. (yes, he has a girlfriend now, and she is a sweetheart). But I told him that we would celebrate when we returned, and he was ok with that. It isn't about the specific date, it's about being together. And we will be able to celebrate Christmas/Thanksgiving and his treatment being completed all together. (guess we better notify the local PD and the neighbors now, because it's gonna be a rowdy celebration).
I will update as we have more information.
Thank you to all of you that have been so supportive of our family as we have traveled this path of many obstacles and victories. This is just another obstacle that we will overcome.
Kyle is a bad ass young man.
Last Friday as he was waiting for Chelsea to pick him up for school, he stood in the doorway looking perplexed. I asked him what he was thinking and he said, "I feel like everyone expects me to be afraid." I asked him how he felt and his reply was priceless. "I'm not. It's not like I'm 7 and they are planning to crack my head open. Everyone needs to just calm down." Lol. That's our boy. Facing everything with a light spirit and an abundant amount of confidence.
Kyle’s Journey
November 4, 2009 at 7:20am
It all started when we took the kids for routine eye exams at the end of August 2007. Chris, Christina and myself all wear glasses and Kyle was saying he hoped he needed glasses too because the rest of our family had them. Kyle kept giving the Optometrist off the wall responses and we thought he was just trying to get the doctor to say he needed glasses. Doctor McFerron turned and looked at us and said gently “I don’t believe he is faking this”. I could feel tears building up as he ran a few more tests. He then informed us that Kyle was completely blind in his left eye!
Kyle later told me that he thought it was normal because he says he could never see out of his left eye. He has adapted so well that even now knowing that he is blind in that eye, I can’t tell! The eye doctor referred us to a Pediatric Ophthalmologist (PO). His appointment was September 12, 2007. The PO sent us for an MRI Brain Scan. The appt was the following Sunday (which freaked me out because who has an MRI on Sunday?).
The following week I started calling the doctors offices and no one would talk to me about the MRI. They insisted we had to WAIT until his appt w/ the PO, next month!). So I had some stern words with a nurse in Kyle’s pediatrician’s office who felt bad and eventually just blurted out that Kyle had a tumor, but she couldn't read the results due to policy. She told me to be persistent and tell the receptionist at the PO’s office to have the PO contact me immediately that I knew about the tumor. I did and he called me back in about 15 min.
He referred us to a neurosurgeon in Tulsa, OK. We had an appointment within the week. It was at that appointment we were able to see the tumor for the first time. It was the size of a golf ball! The neurosurgeon said that he could perform the surgery but that he wasn't confident he would be able to do the surgery as successfully as a pediatric neurosurgeon. So he gave us some options. We needed to decide ASAP.
We asked the Dr. if it were his child, who would he feel was the best surgeon to take on this major surgery. He said no question Neurosurgeons for Children in Dallas, TX at Children’s Medical Center. It is a 6 hour drive but well worth it to know our little boy is in the best hands. We left his office with a disk containing Kyle’s MRI. I sent it FedEx to Dr. Sacco (his soon to be neurosurgeon). He called right away and made an appointment 2 weeks out. By this time we were monitoring Kyle’s vision closely and noticed that he was losing peripheral vision in his right eye too! We contacted the doctor’s office and the nurse told us we needed to get him to the ER in Dallas right away, this was Friday.
We were in the process of moving back into our home (we were displaced for 3months due to a major flood) so we finished up quickly as possible that way if he had to have emergency surgery he would be comfortable when he got home. We left for Dallas on Sunday morning September 30th he was admitted to the hospital through the ER. They did a CAT scan. His tumor was inflamed, putting pressure on his right optical nerve, causing the vision changes in his right eye. The doctors put him on steroids to reduce the inflammation.
In the morning he had another MRI. This was how they were going to be able to “practice” surgery before they went in for real. It kind of works like GPS. Kyle was released to go home after 3days and instructed to remain on the steroids. We had to be back in Dallas Oct.9, 2007 for his regular appointment to discuss options and risks with the surgery. It was a scary day. Surgery was set up for Oct.16, 2007. We had to be at the hospital on the 15th for pre-op. Kyle has a difficult time with needles so the whole floor of the hospital could probably hear him freaking out about getting a finger poke! The day of surgery arrived and I was going out of my mind! It took 9 hours! But we got hourly updates from the operating room. He remained stable throughout the entire procedure.
We spent the next day in ICU while he was coming down from the anesthesia. He had another MRI to see how much of the tumor was still remaining. They were able to remove 75% of it with out causing damage to the surrounding areas of his brain. The pathology came back that it is a grade 1 which is classified as benign! What a relief! They explained that even though it is benign it is still growing at a very slow rate. This slow growing tumor is called a Pilocytic Astrocytoma a.k.a. Optic Chiasm Hypothalmic Glioma (either way it is still a mouthful).
We set up arrangements for chemo to begin Nov.2, 2007 he had surgery that morning to put a port in his chest, which actually ended up being placed on his ribs. He got his 1st chemo that afternoon. He tolerated it fairly well considering the possibilities. He was mostly tired and a little nauseous. He had chemo again 12-4-07 this time he had a little more nausea. He will have chemo every 4 weeks for the next 15-18 months. He is doing very well now.
Update 12-14-07: Had to take Kyle to the ER today. He had hives all over his body! Even on his eyelids and the palms of his hands! He was also experiencing irritation in his throat. He was seen quickly and the doctors decided that one of his medications called Bactrim was behind the reaction. He was taking the Bactrim to prevent pneumocystis pneumonia (a common but potentially deadly disease for chemo patients) his Neuro Oncologist said to discontinue the Bactrim and a different medicine was prescribed to replace it.
Update 1-3-08: Kyle had chemo yesterday. He is having a hard time with it 2day. It is so hard to watch him go through this and not be able to take his pain away.
Update 1-27-08: Kyle began running a high fever and was vomiting today. We took him to the ER, blood counts were ok, and FLU test came back negative. They gave him strong antibiotics called Rosefin through his port and some IV fluids. And after about 6 hours they released us to go home.
Update 1-30-08: Kyle had chemo and an MRI yesterday and it showed the chemo has shrunk the remaining tumor about 20%!!! He is resting now while he recovers from yesterday’s chemo treatment. He is still feeling bad from his ER visit a few days ago.
Update 2-10-08: Kyle is running a high fever again and has been vomiting since he had his last chemo, so back to the ER we go. Flu test negative again, blood counts are within acceptable range. More Rosefin through his port and IV fluids. He has lost 8lbs since 1-30-08. I am so scared and exhausted, cant sleep because he has been so sick. And yet with as sick as he is he still lifts me up and reminds me of what is important. I was sitting with him on the bathroom floor (again) and when he started vomiting again I just broke down crying, the pain of watching your child go through this hell is so much worse than words can say. As I wiped is face he looked up at me and said “Mom don’t be sad, its ok that the chemo makes me sick, it’s working and my tumor is shrinking, its worth it” In that moment he was so weak and sick and yet here he was cheering ME up.
Update 2-21-08: Kyle’s blood counts are very low this week and so his doctor had ordered for him to have a blood transfusion! This was something we had not been prepared for. There is so much information to take in. Kyle is having a hard time understanding why he needs to “borrow” someone else’s blood, he said “don’t they need it?”
Update 2-26-08: Kyle had chemo today. He has developed an allergy to one of the chemo drugs called Carboplaitin. They treated him with IV Benadryl and a steroid called Solumedrol, he promptly fell asleep (due to the Benadryl) and was able to finish up the full round of chemo without any more problems. His doctor said that this reaction was normal for most kids and informed us that it was likely to get worse with each treatment so they will have to pre-treat him for the allergy before chemo from now on.
Update 3-11-08: Kyle’s blood counts were low again today so we are going back to the hospital for another blood transfusion.
Update 3-25-08: This week so far has been a whirlwind!!! It started out like our regular monthly trip to Dallas. We left home Monday on our 6 hour trip, stayed at the Ronald McDonald House, got up early Tuesday (the day before Kyle’s 8th birthday) and ate at Denny’s before his treatment, just like always, and then it was flipped upside down shaken and stirred!!!
We had been inside Denny’s for about 30 minutes and when we left we found our car window busted out and Kyle’s backpack stolen. The car was parked right outside the windows at Denny’s and along a busy street. We thought it was a safe place to park. Apparently there is no such thing. No one saw anything or rather no one has come forward with any info. Kyle’s backpack had ALL of his medication (8 bottles of it), a binder that I kept all of his blood work and medical information was also in the bag along with his homework and books, ALL of his video games his Nintendo DS & PSP the things he used to keep himself distracted during the hours of getting chemo knowing that is was going to make him sick.
We figured we are in a big city the police are going to take the report and that will be it, but they proved us wrong. They went above and beyond the call of duty and brought our little boy a smile. They came to visit him in the hospital just a few hours later and gave him a new PSP, several video games and movies, as well as money to replace the medicine and window. Even now I sit here in tears thanks to their generosity. They touched my heart because that morning Kyle was so upset about everything that had been taken from him and they brought his smile back to him. These officers are truly are angels and we will remember them always! The Dallas area is lucky to have them!
The news stations gave this quite a bit of coverage, I am glad the officers got the public kudos they deserve; too many times the news is focused on the few bad apples when there are officers like these making a difference! I used to have news links here but they have all expired. :( In addition to all the chaos this week Kyle’s blood counts were again very low and so he had to have another blood transfusion immediately following his chemo. The Ronald McDonald House gave Kyle a brand new bike for his birthday! He loves it!!
Update 4-15-08: Blood counts low again; here we go back to the hospital for more blood.
Update 4-22-08: Kyle had chemo and an MRI today. The tumor has showed minimal change in composition and no change in size.
Update 5-13-08: Blood counts are low yet again; here we go back to the hospital for another transfusion. I have been reading up on the research done on the drug called Dapsone that Kyle has been taking to replace the Bactrim that he had an allergic reaction to. The studies had showed in rare cases patients had experienced serious anemia. I called his Neuro Oncologist and he suggested we discontinue the Dapsone and at his next appointment for chemo we will try a different drug called Pentamadine.
Update 5-27-08: Kyle had chemo today and he started on his new drug called Pentamadine. He was only going have to have this treatment every 28days. He had to sit in a booth that filled the air with the drug. After a very short time in the booth he began experiencing severe bronchial spasms which made it near impossible to breathe. Kyle was so very scared and had a panic attack! The doctor stopped the treatment and gave Kyle a breathing treatment to treat him for the panic induced asthma attack. After talking with his doctor we decided not to force Kyle to have that horrifying treatment again. Thankfully he won’t have to resume a different regimen for 28days so that will give his doctor time to come up with a new plan of action.
Update 6-24-08: Kyle was scheduled for chemo today but his platelets are too low so we had to reschedule for next week. Since we were already in Dallas we went and visited our friends at the Dallas Police Department and spent the day with them. We got to see the police headquarters and a room that they call Big Brother. The room is filled with TVs showing all of the security cameras from all over the city! AMAZING!
We got to meet Police Chief Kunkle. He presented Kyle with a plaque and named him an honorary Dallas Police Officer. We got to see the police helicopter and motorcycles as well as their police horses. Kyle’s favorite part of the day was when we went to the Police Academy and got to go for a ride in the squad car with sirens blaring as we raced around the high speed training track! He kept asking to go again and again. He told a news reporter “I wanna go again! I wanna go until I barf!” silly boy. It was a great day! (this comment made it into USA Today's Quote of the Day section). The men and women of the DPD have been nothing short of amazing. Love them.
Update 7-3-08: Kyle had chemo 2day and his doctor came up with the new plan to prevent pneumocystis pneumonia. The drug is called Mepron, it comes in liquid form and Kyle is not too thrilled about it. Chemo has made his sense of taste very sensitive and so when we give him the new medicine we have to have a peppermint ready so he doesn't gag and vomit it back up. He is a trooper though, because he knows the alternative is to go back to the booth of doom!
Update 7-20-08: Kyle has been so very sick the last 3days. We have been in the hospital because of high fever. He got Rosefin in his port all 3 days as well as IV fluids. They ran all sorts of tests and still they have no idea what is causing the fevers. His platelets are dangerously low as well and he has bruises all over just from holding him and spots called petechiae (broken blood vessels) over his entire body because of it.
Update 7-22-08: Kyle woke up today feeling good as new!
Update 8-5-08: Kyle had an MRI yesterday we got the results today. The tumor is smaller!!! We are relieved the treatments are still having an impact on the tumor. He had chemo today and the allergy has gotten worse. We had to pause the treatment because he was having a hard time breathing and broke out with hives.
Update 8-30-08: Kyle has been running fever and very sick again for the last 3days. Yesterday we had a terrifying experience at the hospital! There was a nurse that had never cared for Kyle before and was not familiar with his port. I don’t think she was familiar with being a nurse either! For starters she brought the wrong needle to access his port; his is supposed to be a .75 inch, 25 gauge and this “nurse” brings in a 1.5 inch needle!
She claimed they didn’t have the right size in stock! So she accessed his port but couldn’t get it to work properly, she then proceeds to say that it is not in all the way and began putting all her upper body weight on him trying to force it in!
The mom in me went crazy to see my baby boy hurting and screaming in agony I don’t know what came over me I shoved her off of him and ordered her to leave the room, get the doctor and told her to stay out of my sight! How can anyone be called a nurse and be so ignorant? By this time Kyle was drawing a crowd because of the fear in his screams.
Finally I saw a nurse that had cared for Kyle before and I begged him to help. He agreed, and removed the needle only to find that it was BENT! He went to retrieve the correct size needle and gave me time to calm Kyle down. A lady from the gift shop came and gave him a teddy bear and wished him a speedy recovery. When the good nurse came back he accessed Kyle’s port without any further issue. Kyle finished up his medication and we left the hospital. Today he ran a fever again and I made the decision to drive to a different hospital rather than put Kyle in danger with that ignorant nurse again. The commute is 30 minutes longer but he was treated very well. They did an x-ray of his chest because he was having difficulty breathing after the incident yesterday. His ribs were badly bruised (his platelets were low) but thankfully not broken. He is starting to feel better now.
Update 9-17-08: Kyle had chemo yesterday………. sort of. His counts were good and the day started off like usual. Got his port accessed, saw the doctor, got started on his fluids to pre-hydrate, ate lunch (he had pizza), got Zofran (anti-nausea), got Solumedrol (steroid for his allergy to the chemo) got Benadryl (again for the allergy), got chemo drug 1 Vincristine, all went normally up to this point and then he gets started on the chemo drug 2 Carboplaitin 54 mL he had only gotten about 4 mL when he experienced a severe allergic reaction.
He had difficulty breathing and hives all over and he began vomiting, he was still groggy from the Benadryl so he was panicked because of the breathing difficulty. The nurse came in and shut off the IV pump and then the doctor came in and sat with us for almost an hour monitoring Kyle and discussing his treatment plan. What it comes down to is that his allergic reaction is progressing and with every dose of chemo it becomes more severe. He felt it was unsafe to continue with this course of therapy (we agreed) because not only would the reactions become worse but also the effect on his blood counts as well as his illness after treatment. At this point Kyle is no longer going to be continuing his chemotherapy. The doctors will monitor his tumor by MRI every 3 months to be sure it stays dormant.
If there are any changes we will discuss further treatment options at that time if it should it be radiation or another form of chemo. If we go 6 months without the tumor experiencing growth his port will be removed. The doctor seemed optimistic, telling us there are studies that show kids who develop allergies to the Carboplaitin, and their tumors seem to stay dormant longer. Needless to say this is something that we will have to watch for the rest of our lives. We also had an appointment with the Ophthalmologist. The vision he does have is 20/20 but they told us his vision that has been lost cannot be regained. He has no right side peripheral in his right eye and no vision at all in his left eye.
Amazing thing about this is that people don’t know (unless they are told) because he has adapted so well. We will have our next MRI in November.
Update 10-18-2008: Kyle had another bout with fevers again the last 2 days. Back to the hospital again for Rosefin in his port both days. He is feeling much better tonight.
Update 11-6-2008: Kyle had his MRI last night and we saw the doctors today. The tumor has had no sign of change since his last MRI, which is what we want to see. The doctor is very happy with where we are at this point. His next MRI will be the 1st week of February.
This trip was a special one! After his MRI last night, Kyle met Officer Kattner and his wife Sophia and their 2 sons and grandson. Kyle had a great time. I will post pics of that visit when I get copies from Sophia (I thought I left my camera at home…but I later found it). Then today at his doctors appointment he got another surprise! He got his autographed hat from Caps For Kids! It was signed by Tommy Morello and is a hat that Tommy has worn at several of his shows! Tommy also hand wrote him a letter and sent him an autographed copy of his new CD!!!
After his appointment we went back to the Ronald McDonald House and Sean (the Officer that sat in the patrol car with Kyle after we got robbed in March) came to visit us. He and Kyle assembled a helicopter erector set and then played air hockey. Kyle beat him 3 times in a row and then took pity on him and let him win a match. ;)
After Sean left we went to visit more of our friends…..more like family at the northwest police station. They gave us an amazing framed characture portrait of our family with Officers Passmore, Knoble, & Neeley to remind us of our day with the Dallas PD back in June. It had signatures from several of the officers at the station.
We all love it and plan to hang it in the front room of our house so everyone can see it! They also gave us a few early Christmas cards with some money for the kids to spend and to help with our travel expenses. We feel so incredibly lucky to have them as a part of our extended family. We truly love all of them for how wonderful they are, and how they have supported us throughout Kyle’s treatments. They have been a tremendous source of strength and honestly I can’t imagine life with out them.
Update 11-22-2008: Kyle ran a fever for a brief time today so we had to go to the hospital for some more Rosefin though his port.
Update 12-21-2008: It seems Kyle is making this a monthly thing to run a fever this is the 4th month in a row we have had to go to the hospital because of fever to get Rosefin in his port.
Update 2-5-09: Kyle had an MRI yesterday. We saw the doctor today and he told us the tumor is still dormant The plan is to have his port removed in May, after his MRI, if the tumor has remained the same.
Update 4-6-2008: Kyle had a little accident today and had to get 4 stitches in his forehead. He walked into a brick column that was just outside of his line of sight.
Update 4-13-2008: Kyle got his stitches out today! Doctor said it is healing nicely and shouldn't leave much of a scar. Not that a tiny scar would even be noticed when compared to the one that goes all the way across the top of his head from one ear almost all the way to the other. Kyle is very proud of his scar.
Update 5-13-09: Kyle’s MRI came back and the tumor is smaller and with this good news the doctors have decided to remove his port Kyle is stoked! He had surgery this morning to get the port and in less than an hour he was in recovery eating popsicles.
Update 9-16-09: Kyle had another MRI 2day. The tumor is stable and has had no change since his last MRI.
Update 11-2-09: Kyle had an eye appointment 2day with the specialist, his visual field has not changed, but he will now have Rx glassed as his vision is weakened slightly in his good eye. His doctor says it is nothing to be alarmed about since the rest of us wear glasses too. His next MRI will be the week before Christmas.
Update 12-17-09: Kyle had yet another MRI yesterday. We got the results back today and the tumor is remaining stable and his follow up appointments have been spaced to every 6months instead of every 3months. As always thank you for all of your prayers.
Update 6-2010: Kyle had his regular MRI/Clinic followup again. All is well tumor is still stable =-)
Update 1-2011: YAY!!! MRI shows everything still stable!!!!! Best Christmas present a mom could ask for
Update 6-2011: MRI shows all is well. No vision or tumor changes!!!! Kyle graduated 5th grade last month and received the Student of the Year award (along with many other achievement awards)!!! He will be starting Middle school in August. We feel so lucky to have survived his diagnosis and watch him blow away all the obstacles that have tried to set him back! Next follow-up in December.
Update 12-2011: Everything is still stable. Doc says we will discuss spreading follow-up appointments to once a year at his May 2012 appointment. I am not sure how I feel about this. I think having the peace of mind every 6 months is what keeps me almost sane. This time around Kyle decided to participate in a research study to help better understand the after effects of chemo vs. chemo & radiation on kids. They took 6 vials of blood and did a Dexa scan (he had to fast for 12 hours). Kyle made the decision to take part in the study on his own. We are very proud of him. He hates pokes. When I told him about it and what they would be doing to him all he asked was, "Will this help them to help other kids in the future?" I told him yes and he said "ok, I'll do it.". He didn't feel like he needed to think about it at all. All that mattered to him is that he had the chance to make a difference for someone else. Moments like these assure me that we are doing a good job as parents. We are so proud of both of our kids!
Update 5-2012: This MRI shows tumor has grown slightly. We will now be going back for a follow up MRI's every 3 months to keep a closer eye on it. This is not a life threatening change, but could have a negative impact on what little vision he still has left if it continues to grow.
Update 9-2012: MRI shows that the tumor has once again stabilized. Next appt in 6 months. Visual fields are stable as well.
Update 4-2013: MRI shows the tumor remains stable. No change in visual fields. :)
Update 10-2013: Kyle has been experiencing horrific headaches, so we had to make an unplanned trip to Dallas for a checkup. He did not have an MRI at this visit, but he did see Neurologist, Doctor Owens. HE was diagnosed with migraines (something he gets from me, unfortunately).
Kyle will begin a daily regimen of migraine medication for the next 6 months, then be weaned off. Doctor also prescribed a pain med for breakthrough migraines.
Update 2-2014: MRI shows the tumor is still stable. Visual fields are also good. Kyle has not had migraines since starting his meds last October, so Doctor Owens said we would wean him off after his visit to Maryland this summer. Doctor Bowers is please with Kyle's current stability and as a result has decided to go to yearly checkups. Next visit scheduled for December.
Update 10-2014: Kyle had begun having visual problems and the migraines have returned with a vengeance, so we made an unplanned trip top Dallas for a checkup. We received heartbreaking news that the MRI shows 2mm of growth. Because of this, Kyle will be starting Radiation Therapy. He will have 30 rounds of radiation, to be administered daily for 5 days a week. The growth is not responsible for the migraines or the vision changes, his fields are (thankfully) stable at this time. He has resumed taking his migraine medication.
I will be taking a leave of abscence from work so Kyle and I can live in Dallas for the duration of his treatments. Not sure how we will afford it, but we have to do what is best for Kyle.
We will (hopefully, if they have room) be staying at the Ronald McDonald House... We will be there through the holidays, which was a pretty sad moment for Kyle at first, because he wants nothing more than to be able to spend time with our family (and extended family) and his girlfriend. (yes, he has a girlfriend now, and she is a sweetheart). But I told him that we would celebrate when we returned, and he was ok with that. It isn't about the specific date, it's about being together. And we will be able to celebrate Christmas/Thanksgiving and his treatment being completed all together. (guess we better notify the local PD and the neighbors now, because it's gonna be a rowdy celebration).
I will update as we have more information.
Thank you to all of you that have been so supportive of our family as we have traveled this path of many obstacles and victories. This is just another obstacle that we will overcome.
Kyle is a bad ass young man.
Last Friday as he was waiting for Chelsea to pick him up for school, he stood in the doorway looking perplexed. I asked him what he was thinking and he said, "I feel like everyone expects me to be afraid." I asked him how he felt and his reply was priceless. "I'm not. It's not like I'm 7 and they are planning to crack my head open. Everyone needs to just calm down." Lol. That's our boy. Facing everything with a light spirit and an abundant amount of confidence.
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Trisha Blunk Trease
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Dewey, OK
