Jackson has been so brave the last few weeks. Medically there seems to be a lot going on. He is having some trouble swallowing. Doc has advised he tilt his chin down to drink so he can swallow more safely. He is doing very well with this and nothing further needs to be done at this point. They say he will get worse with the radiation before it gets better. We are hoping this is the “worse.” He’s very patient with everyone telling him what to do, cooperating at the Dr every day, and with taking his medication. His port was replaced this week. His body rejected the first port and it was no longer working properly. He has received blood twice over the past 2-3 weeks. The routine of daily radiation, medications every 12 hrs, blood draws, and images has continued. The good news is he only has four more days of radiation! Then the routine changes to once a week blood draws, an office visit once a month, and the big MRI scan is scheduled for February 22nd. I am hoping God will reveal his healing at that time but I am aware it may take longer. Jackson is a strong little boy and he can wait if he has to. I am a nurse, as most of you probably know, but I have not seen a child’s little cheeks as swollen as Jackson’s. He looks miserable. He is very lethargic and it’s rare but an honor to be at the house when he is awake. He eats a little, cuddles up with his blanket as he is cold at all times, and falls back to sleep. Last night he asked for spaghetti O’s and he wanted to dump them into the bowl. Matt carried him to the kitchen so he could prepare his sgetti himself! Still independent as he can be. I have not had the privilege to see them but Ash says he has cracked a few smiles lately.
Make a wish is coming to town! All Jackson wants is to go to the beach. At age 4, almost 5, what would you want to do? The beach does sound very nice right now. I’m sure they are going to ask him again so we’ll see what he has to say.
Did everyone see the article in the news paper January 8th? Their picture and article was on the front page and looked wonderful.
Thank you to everyone how bought a tee shirt! We are still taking orders and will place another Monday. You can still send your order through email to Jacksonsjourney@comcast.net. Please include your phone number in the email in case there are any questions. I’m sorry we have not made orders available on line yet. I believe we will be forwarding the web site to jacksonyork.me. It is just a more professional site created with assistance from Snapper Cridge. When we forward the shirt order form will be available at that time.
Upcoming events in February: Cycle a thon at the YMCA on the 5th from 10am-4pm. On the 26th there will be a concert/battle of the bands at the Moose. Everyone is welcome bring your kids! We will have shirts and wrist bbands at both places.
I believe there is much more in the works. I will let you know details asap.
Thank you again for all your support and prayers. Ash and Matt seem to be holding up great with all the support even if it is silent support. Sometimes that support they may not even be aware of, a smile, or a nod when you see them is the best kind. I know they feel the love and support from the community and it is helping!
Colts
A lot has been happening at the York household. They enjoyed the New Year come in the comfort of their home and on Sunday went to the Colts/"fire team" game. Jackson and Matt gave the players high fives as they ran out on to the field to start the game and were pictured on the big screen! Kyle and I were planning to go with them but I could not get off work in time. We eventually made it to the game but missed all the important parts (Jackson on the field). That is not important though. What is important is Jackson had a wonderful time (even though I want to cry everytime I think about it). Matt, Ashely, and Jackson sat in field seats basically on the field. Closer than front row! Kyle and I could see them from our seats. We talked to them on the phone and waved from up high. It was an amazing experience for them and I know they all 3 will remember it forever.
After the game it was back to reality. Mondays are hard on the 3 of them because Jackson has to be put to sleep by mask in order to access his port. He is not fond of the mask and it is heart breaking for Matt or Ashley to hold him down. Tuesday blood work showed Jackson needed a blood tranfusion so Wednesday was a long day of getting blood. Matt also had to go back to work this week so I need to be a better cousin and check in on Ash a little more. It can't be easy on her. I know she has depended on Matt so much though all this, that's what spouses are for. I am sure it's even harder for Matt to leave them for work but he is doing what has to be done at this time.
Tee shirts! You can place an order at jacksonsjourney@comcast.net. Adult sizes S-3XL $15.00, Youth XS-L $10.00, and 6month-4T $8.00. Questions, send an email to the above address. Shirts will also be available on this web page, coming soon. All proceeds go to Matt and Ashely to help with finances. Thanks to everyone for all the support. God bless!
After the game it was back to reality. Mondays are hard on the 3 of them because Jackson has to be put to sleep by mask in order to access his port. He is not fond of the mask and it is heart breaking for Matt or Ashley to hold him down. Tuesday blood work showed Jackson needed a blood tranfusion so Wednesday was a long day of getting blood. Matt also had to go back to work this week so I need to be a better cousin and check in on Ash a little more. It can't be easy on her. I know she has depended on Matt so much though all this, that's what spouses are for. I am sure it's even harder for Matt to leave them for work but he is doing what has to be done at this time.
Tee shirts! You can place an order at jacksonsjourney@comcast.net. Adult sizes S-3XL $15.00, Youth XS-L $10.00, and 6month-4T $8.00. Questions, send an email to the above address. Shirts will also be available on this web page, coming soon. All proceeds go to Matt and Ashely to help with finances. Thanks to everyone for all the support. God bless!
Christmas,
Jackson and the family seemed to have had a wonderful Christmas. He and Rylie have more toys and gift than they know what to do with. Ash says they need to build on a room to their house for all their new things. Thank you to everyone involved! Jackson, Matt, and Ashley are going to the Colt's game Sunday. They play "the fire team," as Jackson would say. They have tickets by the tunnel and get to go on the field to give high fives to the players as the come on the field. He's very excited!
This week started week 3 of radiation and the physician is slowly decreasing Jackson's steroids. The steroids are making Jackson very cranky so Ashley and Matt are praying he cheers up a little once the dose is decreased. Rylie is cutting teeth and is cranky as well, so they have their hands full.
Lindsay and Jessica are working on putting Tshirts together (adult and child sizes available). I’m hoping we can put and order in soon. I am not sure about pricing at this time but If you would like one, email us at jacksonsjourney@comcast.net. I will have more details soon and hopfully an order form on this website if your willing to pay shipping. Hope everyone had a wonderful Christmas and have a happy New Year!!
This week started week 3 of radiation and the physician is slowly decreasing Jackson's steroids. The steroids are making Jackson very cranky so Ashley and Matt are praying he cheers up a little once the dose is decreased. Rylie is cutting teeth and is cranky as well, so they have their hands full.
Lindsay and Jessica are working on putting Tshirts together (adult and child sizes available). I’m hoping we can put and order in soon. I am not sure about pricing at this time but If you would like one, email us at jacksonsjourney@comcast.net. I will have more details soon and hopfully an order form on this website if your willing to pay shipping. Hope everyone had a wonderful Christmas and have a happy New Year!!
Update,
Hi everyone. Sorry I haven't updated before now. There has been a lot going on. Jackson finished his first week of radiation this Friday. It went well but he is worn out. He's going to PT/OT now and seems to be walking a little better. We have family Christmas parties this weekend so I hope he will have a good time playing with all his little cousins. The Bracelets went really fast! I am having to turn people down because I am out. I have ordered more and should have them in a few days. Lindsay is working on shirts (which I'm really excited about). They will say "I wear gray for Jackson" and have a gray ribbon (gray for brain cancer), with a baseball, too. We will be selling them soon. Thank again everyone for all your support. It's really encouraging to see how many people care. Makes this scarry world feel like a better place!
The journeys began...
Your life is perfect and completely normal with 2 healthy children, a little house you have made a home, two dogs, and great jobs. How could anyone ask for more? A lot of us can look at our lives right now and say the same but it all can quickly change, and you’re life be flipped upside down overnight.
The statistics show only 200 children in the entire US are diagnoses with DIPG (Pontine Gliomia) each year. How does it find your family?...
Meet Jackson. He is a very outgoing, energetic (if you can’t tell from the pictures), athletic, fun, loving 4 year old boy. He loves his 10 week old sister, whom he wanted to name Dora, loves going to preschool, and has a crazy love for baseball most 4 year old children could care less about. He amazes me how he can throw, catch, and hit a ball. Approximately a month ago Mom and Dad started noticing something was wrong when he developed some clumsiness. Most children are clumsy but not this athletic 4 year old. Doc thought he had an ear infection and prescribed an antibiotic. Becoming clumsier, falling, and nausea/vomiting caused the physicians to investigate a little further and sent Jackson for a CT scan of the head at the county hospital. There was defiantly something they were concerned about but new it was much too complicated for them to handle. He was sent to Riley immediately, at which in time Jackson thought he was going on vacation because Mom was packing his clothes. Without wasting time they rushed to one of the most known pediatric hospitals in the US where they thought, if anyone can give us good news it will be them.
This has been one stressful afternoon. The hope was surgery the next day, “if the tumor was operable.” After an MRI that seemed to take forever, in less than 24 hours after finding the mass, Jackson was given 12-16 months to live the life he should have more than 80 years to experience.
In less than forty eight hours Jackson’s left side was almost flaccid, he could not walk, use his left arm, or focus his left eye. The tumor was the size of a tennis ball and there was no way to remove it because of its location.
I am telling you this because I love this child. I love his mother, father, and all of my family whom is struggling greatly at this time. There is so much to think about. So much to comprehend and the last thing I want Jackson’s parents to worry about is finances, of which, at this time there are none, because they are not going to miss another second of this precious child’s life. They need to support him and we need to support them. I am not asking for you to donate money. Donating your prayers would be just as appreciated. The doctors are giving Jackson very little time but I know God has better plans. Medically there is nothing the doctors can do but the word terminal means NOTHING to God. Jackson is an amazing child and we know he is going to receive a miracle. In the mean time pray for peace, comfort, and words for Matt and Ashley when Jackson starts asking questions about his failing status. But, if you do have extra money, it would be used to support a very special family in their time of need. Merry Christmas to everyone reading and I will try and keep you updated on Jackson’s journey.
The statistics show only 200 children in the entire US are diagnoses with DIPG (Pontine Gliomia) each year. How does it find your family?...
Meet Jackson. He is a very outgoing, energetic (if you can’t tell from the pictures), athletic, fun, loving 4 year old boy. He loves his 10 week old sister, whom he wanted to name Dora, loves going to preschool, and has a crazy love for baseball most 4 year old children could care less about. He amazes me how he can throw, catch, and hit a ball. Approximately a month ago Mom and Dad started noticing something was wrong when he developed some clumsiness. Most children are clumsy but not this athletic 4 year old. Doc thought he had an ear infection and prescribed an antibiotic. Becoming clumsier, falling, and nausea/vomiting caused the physicians to investigate a little further and sent Jackson for a CT scan of the head at the county hospital. There was defiantly something they were concerned about but new it was much too complicated for them to handle. He was sent to Riley immediately, at which in time Jackson thought he was going on vacation because Mom was packing his clothes. Without wasting time they rushed to one of the most known pediatric hospitals in the US where they thought, if anyone can give us good news it will be them.
This has been one stressful afternoon. The hope was surgery the next day, “if the tumor was operable.” After an MRI that seemed to take forever, in less than 24 hours after finding the mass, Jackson was given 12-16 months to live the life he should have more than 80 years to experience.
In less than forty eight hours Jackson’s left side was almost flaccid, he could not walk, use his left arm, or focus his left eye. The tumor was the size of a tennis ball and there was no way to remove it because of its location.
I am telling you this because I love this child. I love his mother, father, and all of my family whom is struggling greatly at this time. There is so much to think about. So much to comprehend and the last thing I want Jackson’s parents to worry about is finances, of which, at this time there are none, because they are not going to miss another second of this precious child’s life. They need to support him and we need to support them. I am not asking for you to donate money. Donating your prayers would be just as appreciated. The doctors are giving Jackson very little time but I know God has better plans. Medically there is nothing the doctors can do but the word terminal means NOTHING to God. Jackson is an amazing child and we know he is going to receive a miracle. In the mean time pray for peace, comfort, and words for Matt and Ashley when Jackson starts asking questions about his failing status. But, if you do have extra money, it would be used to support a very special family in their time of need. Merry Christmas to everyone reading and I will try and keep you updated on Jackson’s journey.
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