- Posted by: Help JackMay 18 2013 08:18am
We had the wonderful opportunity to participate in a Relay For Life with Jack as a survivor. What a wonderful opportunity!
- Posted by: Help JackMay 17 2013 09:33pm
SuperJack at the end of the Relay For Life walk. It poured, but sure was worth it. We met a wonderful lady who had stumbled across Jack's story in the midst of having learned she had cancer. Jack's "miracle marks" story really had an impact on her. We were so thankful to have met her, hear her story, and heard how our little Jack had inspired and gave her hope. Very emotional experience for us!
- Posted by: Help JackMay 17 2013 05:37pm
Jack's signing the "Hands Of Hope" banner at the Relay!
- Posted by: Help JackMay 17 2013 04:23pm
Getting ready to participate in a "Relay For Life" walk in Auburn tonight. Jack'll be doing the last "survivor lap!"
- Posted by: Help JackMay 11 2013 02:33pm
Happy 6th birthday Jack! You are mommy and daddy's hero!
- Posted by: Help JackMay 08 2013 09:01am
Mommy’s post today, May 8th - one year to the day of Jack’s day-long surgery:
At 3:30 in the morning, this little guy crawled into bed with me. Since then, all I could do was hold him and stare at his perfect little face and think about how exactly one year ago today, three skilled surgeons and a whole support team of other people at Children’s opened his head and scraped around in there for 10+ hours, trying to rid his precious brain of the ugliness threatening to take him from us. They saved his life this day, May 8, one year ago. It was awful, and he “woke up” in a very scary state, nothing a mommy or daddy should ever have to go through. But this morning, as I listen to him breathe next to me, all I feel is grateful. I remember the night before, kneeling by him as he slept in his sleeping bag on our floor, holding his head and pleading with God for a miracle. God said “yes” this time. The tumor is gone. Jack is in recovery. Not quite back to “normal”, maybe never all the way back, but his new normal is just fine with me. How I love this almost six-year-old boy!! <3
Detailed Jack update from Brent and Laura (we actually started May 2nd)
Praise God! The MRI last week went off without a hitch. The weather was beautiful, we had barely any traffic (thanks to the carpool lane), and actually arrived early. We ended up being seen early for all our appointments, and had a great time between the scan and the appointments up at U. Village.
Jack woke up unusually early from his MRI (15-20 minutes earlier than normal), so he was grumpy for quite some time as he sorted out the anesthesia’s lingering effects. Once he had some food in him, he was better.
So – for the meat and bones now.
Dr. Lee and Geyer came into the room, and the first thing Dr. Lee said is – “ The scan looks good – in fact, it’s the best one yet!” We appreciate her abruptness and cutting to the chase with us on this very important matter. She and Dr. Geyer proceeded to show us the scan, and compared it to the one in January. The surgical site location had filled up with fluid because of the absence of matter, and it was quite significant in size. The length of the site in January was 36 or 39 mm, and had shrunk down to 24 mm.
The trapped temporal horn area fluid which was the other part they were monitoring has shrunk drastically in size. This great news was explained to us as the surgical areas scarring had reduced like most scars do. Because of the reduction in scar tissue, the ventricle system is becoming more open and the fluid is not remaining trapped, and is circulating more like it is supposed to be. The site was not gone, but was visually quite a bit smaller from the January scan.
Jack had one very important question he asked Dr. Lee. Hearing his little voice ask “can I play on the playground at school?” and seeing his smile when Dr. Lee said “yes” was worth more to him and us than money could ever buy.
Dr. Lee cleared Jack to be a boy again. No restrictions for playing. He just needs to wear a helmet when normal kids (normal meaning kids that didn’t have a chunk of skull cut out for surgery) would – riding a bike, scooter, etc… - of which we are kind of fanatical about anyways. However, due to Jack’s surgery, he can’t ever play contact sports such as football - which is fine because there are a zillion other things he can be involved in. We wish we were there to see his joy at recess as he FINALLY gets to play on the playground equipment the first time. We know he is smiling from ear to ear with his new freedom at school and getting to do what his friends have been free to do all year.
As far as his tremors (Ataxia) and drop foot go, the rehabilitation specialist we saw believes that they are due to weakness. The problem with kids in general and rehab is that they can’t really focus on strength training for long periods of time. Benefits usually start at age seven when kids start to “get it” as far as training goes. The great news is that as Jack grows and just becomes stronger and more muscular, the difference in strength between his right and left side will diminish in time.
We don’t take one single breath he takes for granted. There are so many stories like Jack’s that turn out drastically different. We are thankful for every single second we get to enjoy our precious little boy.
God Bless, Brent and Laura
Daddy’s thoughts today - May 8th one year post surgery:
Jack came into our room early this morning because he had a “bad dream.” He crawled into bed on my wife’s side and snuggled in and fell asleep. What a contrast to one year ago. I don’t know if I even slept the night before Jack’s surgery. Last night and tonight I’ve had visions like you see in movies where a slew of memories bombard someone at the same time. All these thoughts have passed through my mind and more. We had slowly watched our precious boy balloon up due to the massive steroids he was on prior to surgery, and become more weak almost day-by-day. The night before surgery, I must have said 30 or more prayers asking primarily “why?” I remember feeling horror, anger, resentment, extreme total abject fear, and looking for someone or something to blame. No resolve. That night, I held my boy and prayed for God to enable the team to get all of the horrible ugly tumor out of his precious head. Before surgery in the waiting room Laura and I with Jack said more prayers asking for God to do his will and prayed for a miracle.
After they took our son away, Laura and I went for a walk. We cried, we prayed, we were silent. I hate Children’s. I love Children’s. I hate that we had to go there for our son, but love what they did for him - they gave us our son’s life back.
When we finally got to see Jack after surgery, the horror finally set in. We had been informed by Dr. Ellenbogen that they were confident they got all the tumor out that they could see at a microscopic level, and Jack would be fine. However, when we were finally allowed to see Jack, we were speechless. We were not prepared. He lay in bed, not aware of his surroundings or us (for nearly two weeks). He was connected to tubes, and many machines that were making noises and flashing with alarms constantly. His head was mostly shaved, and he had a huge amount of stitches from where they opened his skull up to remove the tumor.
Laura and I were incredibly happy we were able to see our precious little boy, but not prepared for what we saw. Jack had been in surgery face down, with his feet elevated, so his face was swollen and not really recognizable.
So many more terrible moments and thoughts flash through my mind every second today - like I’m stuck in a horrible Groundhog Day movie - only this is real. Perhaps remembering is acceptable in cases like this because I realize that somehow we made it through and have emerged changed. Changed in many ways.
Jack started waking up and wasn’t able to move his right side at all, couldn’t talk, and thrashed around for the first couple of weeks. Where was our little boy? Where did he go? Was he still in there? Is he scared? Is he trying to ask us why this happened, or please help me mommy and daddy? So many questions and frustrations. To be honest, I don’t know how we did it, or made it with our sanity. Those first weeks were challenging to say the least. There were more trips for MRI’s, emergency surgeries, “brain drain” issues, a second one added and countless more alerts, alarms, emergencies, stressful times, not enough nourishment, and definitely not enough sleep.
Frustration was so intense. I can fix most things - I’m great with tools and building/modifying/adapting just about anything so they/it can work, yet my heart was completely broken because I was helpless. Absolutely helpless. All I could do was sit and watch my son and have faith that my little boy would be ok.
Along with family, our strong faith was the only way we were able to make it through this absolute, most horrific and worst period of our lives.
This morning, Jack was still sleeping in our bed as Laura was in with Evan and Jaidyn, helping get them ready for school. I crawled in with him and started scratching his back and started singing a song I sing to him at night, and he slowly woke up. When the song was finished, he rolled over and hugged me tightly.
So many have prayed, and helped our family in so many ways. I am feeling very reflective, and am not ashamed to admit that this morning as I sang to Jack, tears flowed freely because we were given the gift of his life, and I was able to sing his song to him on the anniversary of the worst day of my life. When I finished the song, and it was time to get him ready, well... reality hit and the whining started. Then I started eating his ears and tickling him and somehow, all seemed right with the world.
I wonder how many tears we have shed.
Life continues. For us, it will continue with our son and we are humbled and thankful. The spectre of this will haunt us for years - especially since the plan is still an MRI every three months for one more year. Then they will determine the plan of action for the next ten or more years.
All I care about now is that today we celebrate Jack’s amazing journey, struggles, fight, and story. Tomorrow, Children’s Hospital gave us the ability to celebrate his birth again as he turns six years old.
God Bless you my son, and God bless you for your thoughts and prayers.
- Posted by: Help JackMay 01 2013 05:12pm
Hey Mrs. Wilkening! Guess who gets to play on the playground starting TOMORROW?!?! :) :) :)
- Posted by: Help JackMay 01 2013 03:26pm
MRI CLEAR! Actually, Dr Lee and the oncologist said its the best scan yet. Miracles continue. More details to come. Meeting with PT next. Thanks for your continued prayers! God Bless, Brent and Laura
- Posted by: Help JackMay 01 2013 03:03pm
Goofy faces in the chair. Waiting in the room to hear the MRI results. This is the worst part... waiting to hear...
- Posted by: Help JackMay 01 2013 02:03pm
- Posted by: Help JackMay 01 2013 01:26pm
We're waiting for pizza between appointments - being goofy!
- Posted by: Help JackMay 01 2013 01:24pm
There were times in the hospital that all we could manage was to breathe...
- Posted by: Help JackMay 01 2013 11:22am
Hungry and grouchy, but awake. He loves to get fries, chippy's, chocolate milk, and a hot dog after his MRI's!
- Posted by: Help JackMay 01 2013 10:39am
Waiting for our Superman to wake up. We'll get the results this afternoon at the barrage of appointments beginning at 3-ish.
- Posted by: Help JackMay 01 2013 09:37am
9:36. Jack's asleep heading for his MRI.
- Posted by: Help JackMay 01 2013 08:45am
A little thank-you video. Ready for the MRI. Jack's such a pro at this. He is one step ahead of the staff here!
- Posted by: Help JackApr 30 2013 10:31am
Here we are.
Less than 24 hours before Jack's big one-year MRI. All scans thus far have shown nothing - some would call them boring, which is exactly what we pray for - no regrowth, etc...
Wednesday, May 1st at 9:30, Jack is scheduled for a full-sedation, contrast MRI. We will pray for more of the same - boring. PLEASE JOIN US IN PRAYER!
Life has been fairly normal and busy. We ended up taking Jack in for another headache a couple of weeks ago which ended up in a normal CT scan up at Children's. Probably the first of many "dry runs" that will show nothing abnormal, but simply will be a part of our new normal. We do not wish to leave anything to chance with Jack, and will gladly drive up to Children's for peace of mind for Jack - and his mommy and daddy! Hopefully, prayerfully, nothing will be revealed in the more detailed MRI that would have caused that headache.
Additionally, Jack has been breaking out in horrible hives as of late. His allergy tests have come back negative. The allergist we saw mentioned that some symptoms of the ends of colds result in a viral hive outbreak. We were concerned that these may be some sort of auto-immune deficiency symptom. The allergist didn't seem to think we needed to draw blood at this time, as many kids have had the same symptoms at the ends of colds - which Jack is getting over.
We also have a close friend whose son had a major leg surgery, and ever since the surgery, he now breaks out in hives at the tail end of colds - always in the evening, and they are gone in the morning - same as Jack. Perhaps the anesthesia, or trauma of surgery has re-wired Jack to react to colds differently from now on. We'll take that any day over a worse alternative. Laura had to call the anesthesia dept. to make sure that Benadryl wouldn't affect the MRI results in any way. Benadryl is ok the night before (should we need), but the morning of we can't give him any.
Last week, I had an old friend who lives in Texas come into town, and his company gave him four tickets to an evening Mariner game. He took his dad, Jack and I (Brent) to a Mariner game, and the seats were the best I've ever had. We sat in the first row behind the Mariners dugout! One of the players popped his head up earlier in the game, and later, popped his head up again and rolled a ball over to Jack! We couldn't stay the entire game, but Jack had so much fun. It was nice to get him out and see a game. He was so excited, and fell asleep on the way home with the ball tucked safely and tightly in his precious little hands.
We are continuing our new normal life, and count our blessings every day.
November 2, we have been asked to speak for a huge Children's guild fundraiser and share Jack's story. We are excited to be able to tell part of our story and the struggles, pain, miracles and hope we have experienced in the last year. We are looking forward to sharing more good news about Jack's amazing recovery at the fundraiser.
Please pray for Jack (and mommy and daddy) tomorrow after 8:30 ish, and at 9:30 when Jack goes under for his MRI. We ask you to pray for yet another boring MRI. Boring in the sense that nothing can be seen as far as tumor re-growth, and no complications from the sedation. We ask that you pray for the trapped fluid pocket to continue to recede, and for Jack's CSF ventricle system to continue to work, and the scar tissue to shrink so the transfer of CSF returns to normal. We ask for strength, guidance, and knowledge for the doctors to be able to correctly interpret the images and assist us in decision-making for Jack.
We will meet with the entire team again, starting at 3:15. We'll meet with neurosurgery, oncology, therapy, and more. We won't be able to update until Wednesday evening with a full update of the day's activities. Regardless, we will update on the tumor and trapped fluid in-between the meetings Wednesday afternoon.
We also ask you to pray for the countless families that have gone through traumatic situations like ours. Our hearts go out whenever we hear of a new child and their family going through what can only be described as a living nightmare. We prayed and fought our way through our worst nightmare, and our hearts go out when we hear of another child and family going through something horrible.
Thanks for your fervent prayers, sharing Jack's story of hope, and for following Jack's amazing story.
Laura and I were looking at videos last night that we took of Jack at the hospital - so many amazing videos: first laugh after surgery, first bites of real food, first time upright and us pinching his butt so he would stand up straight, showing off Lego's he built and barely able to hold them with his right hand, watching him struggle through taking simple steps, FINALLY walking out of the hospital on his own with his Superman costume on...
Jack's mommy and daddy :-)
- Posted by: Help JackApr 22 2013 07:41am
"... cause I'm gonna give it to God!"
- Posted by: Help JackApr 19 2013 11:01pm
Last update tonight: 11:00 p.m. - Ct is fine. No issues that they can see. Didn't do contrast. Imaging differences aside, same as January's MRI. Good news. So why don't we feel more relieved?? Good news anyway. Headed home after the iv is out. Thanks for your thoughts and continued prayers!
- Posted by: Help JackApr 19 2013 09:26pm
Update 8:55 - Plan: waiting to get a ct. They are going to draw blood and do an iv just in case they need to use contrast.
- Posted by: Help JackApr 19 2013 06:57pm
Spoke too soon. PRAYER WARRIORS I NEED YOU!! On our way to Children's after another "bad headache in my forehead" that made his tummy not feel good. Pray that everything's ok in there!!!! PRAY HARD!!!!!!!