Update 12/14/13

It has officially been a year since Collin was been diagnosed, and not that I’m counting but today is technically day 368. A year ago- I got a phone call that would forever change our lives. It has been 368 days of huge struggles, uncountable tears, and much pain. But it has also been a year of much blessing, answers to many prayers, and watching God perform miracles. Our future is yet to be seen but I am thankful that God is in control and He is bigger than that phone call, He is bigger than cancer, He is bigger than our fears. Praying for another year of blessing and many more years with our son. I copied this from my Facebook post because I can’t say it any better than that. 368 days….

So not much to report from his last treatment other than that it went really well this last time. He ate well the entire time we were there which has never happened during a hospital stay and he was begging the last night when he wasn’t hooked up to go and hang with the nurses. So Thursday night he was running the halls and chatting up the nurses and hopefully not driving them nuts! I am praying that this next round goes smoother as well, but we’ll see since it is the harder round.

His right eye is completely back to normal, but this left eye is still lagging. It still looks dilated and is still slow to respond to light. We need this to resolve before starting the next round or will will have to have another reduced dose and seeing as we are doing this, I’d really like for him to be able to get the treatment he needs. However, I understand that whatever happens with this is God’s will and ultimately He is in control of this anyway and more or less drugs doesn’t hinder Him. Collin’s numbers were also good before we left. The treatments always mess with his numbers and this time was no exception, but it wasn’t as bad as other times. Probably because his own body has started to recover from transplant and is starting to finally make its own cells. For the longest time, I was very concerned as to why his numbers weren’t going back up and right before we went in for this last round his numbers showed two times in a row an increase without any assistance! This is a huge blessing as it shows his body is finally starting to heal.

We found out this week that because of the holidays his next round will be a week later than I thought. His next round he has to be hooked up to IV’s for 4 days as part of his treatment. This can be done at home and went well last time, but they can’t do this over the holidays when the staffing is a bit thin just in case anything were to go wrong. So our proposed start date for the next round is Jan 5th.

The big news for today is that we had an amazing opportunity thanks to the Wisconsin Air Force and the hospital to go to the “North Pole”. Months ago we were told about this opportunity and it sounded like something that Collin would love and it would have also been right before his next hospital stay (which would have started this weekend…) so we agreed to do it. I can’t even begin to explain this but I will try. The “North Pole” was at the 128th Air Refueling Wing of the Wisconsin Air Force. We had to be there by 10:15 today and when we got there they started out by parking our van for us and we were ushered inside one of the buildings, but before entering we were greeted by 3 giant dogs with Christmas vests on and Santa hats. Coop and Collin were already excited at that point. When we walked in the door there were probably 30 elves and we were given 2 of our own elves to help with the boys. Then we were taken to a room where we got our “tickets” to get on the plane to the North Pole and then taken to a room with seating similar to an airport. The room was decked out in Christmas decor and on the way in each of the boys got bags and got to pick out a hat, scarf, and mittens as well as an animal that made noise. Then we got to choose our seats and we got to talk to many special guests- like Mickey and Minnie Mouse, elves, Air Force Fire Fighters, Air Force personnel, and other families. Collin was pretty shy at first, but his elf did a fabulous job of getting him to open up. I thought Coop would be scared of the giant animals, but he loved it and was smiling from ear to ear. Then we were escorted out to a bus that took us to our plane. The boys were so excited to even ride on the bus and Collin said he had been waiting forever to ride a bus. (The last time he rode one was when he went with me when I directed my students at rotary lights and he still talks about how cool it was.) They were also amazed at the huge planes. We unloaded from the bus and got to board the “Santa liner”. The inside of the Air Force plane was decked out in Christmas lights, balloons, and other cool decor. We found our seats and they shut the door and we “left” for the North Pole. (Really we taxied around the base, but it was super cool for the kids and they didn’t know because there were very few windows and the ones that were there were covered up.) During the flight the kids were served lunch and they were called one by one to go to the front of the plane to fly it with the pilots as well as wear a headset and tell Santa they were on their way and what they wanted for Christmas. Both boys were not shy and loved getting to “fly” the airplane. Afterwards, we unloaded and rode a bus to the “North Pole” which was another building on the base. When we got there we were greeted by Mr. and Mrs. Claus and a huge chorus of carolers. We were led into a large room which was so beautiful and we each had our own table for our family. The boys all had teddy bears, coloring books, and a stocking sitting at the table for them. Then they got to go pick out another stuffed animal and a blanket. (I can’t even tell you how big the bags were that we came home with today- they really went all out!) Tom and I got to eat lunch and the cool thing was, they took the boys around and did things with them without any hesitation so that Tom and I could actually eat. (Huge thing for us…) The boys got their face and hands painted, got balloon animals and swords made for them, and got to eat some candy as well. The elves were so amazing with the kids and made them feel so special. They knew us all by name- they had really done their homework. After we were done eating Santa and Mrs. Claus came back and all of the kids sat in a really festive area and received presents from Santa one by one. The gifts they received were actually things they had asked for because months ago we had to turn in a list of things that they might want and they all got something off of their list. One of the highlights of the day for me, was that Jay (mentioned in our earlier prayer requests) and his parents were there. I can’t tell you how good he looked and how amazing it was to see the smile on his face and see how excited he was during the whole day. What a change from what we had seen at the hospital. I will say that many tears were shed by this mom today- not only for my own boys but for Jay as well. What a blessing today was for the families that were involved. What a wonderful distraction from all of the hard things these kids go through and what a way to put a smile on their faces and get them excited. I can’t tell you how excited each one of my boys was- even Lukey! They even got to ride in a fire truck with the sirens and horns blaring! At the end of the day they gave each one of the boys their very own ornament with their names on it and one for our family. When I opened the one for our family I just broke down in tears- it was a little plane that said “flight to the North Pole- 2013”. What a special gift! We will never forget this day and what a blessing and special time it was for all of our kids. To see the smiles and their excitement was more than my heart could fathom! The pictures didn’t do it justice…. but I’ll post a few anyway.

I will end tonight by saying though that our day did not end as happy as it started. We found out tonight that our good friend Sam (mentioned in many prayer requests and talked about in previous blogs) passed away this morning. I can’t even put into words how much it hurts- and more so as another parent knowing the anguish that his parents have to be feeling right now. Their family is really special and has been so kind to us. For example, for our first round of antibody- there was a package in our room from Sam and his mom when we got there of fun stuff. Cool boy books for Collin, legos, and a note from Sam as well. And for mom there was a note from Phyllis (his mom) as well as chocolates for the visit. There have also been many nights when we’ve messaged from our rooms or when she’s messaged me from home hearing that we were having a rough night- she’s been a truly wonderful friend. I wish there was something I could do or say to help her, but there is nothing I can do to take this pain away, to bring him back. I have prayed and I will continue to pray for them, but I wish that I didn’t have to pray that their pain was less- that they would be comforted. I would never wish this on anyone. It’s bad enough to watch our kids fight through the pain and agony of treatment, the pain of being separated from their family and friends, the isolation they endure for the sake of keeping them safe, and the mental tole that treatment takes on their little minds…. but to see them fight through all of this and die…. that is a pain I cannot describe to you. On one side there is no pain anymore for him, but their is pain for those that are left- the parents that know, watched, and lived these anguishes with them. What now? I have pondered this so many times, because as much as I wish I didn’t have to, you can’t help but force yourself to go there. I will spare you all explaining it, but I wouldn’t wish it upon anyone. So I beg of you this week, take time to pray for their family- for his parents and siblings (he has an older and younger brother and a younger sister.) I don’t honestly know exactly what to ask you to pray for, but please just pray for them. God’s answers are not confined by our inability to ask correctly so please just pray. Thank you again for praying for our son and the others that have been on our prayer requests. We covet your prayers and are so thankful for them.

Thankful for…

* A God and Savior who is not confined by our inabilities, our weaknesses, our lack of faith, but can do above all that we ask or think. A God who is bigger than cancer and bigger than death- in fact, conquered it.

* The countless prayers that have gone up on Collin’s behalf, as well as our dear friends also listed in our blog. As parents there is no way to express to you how much we appreciate them and how much comfort we take in dark times, knowing that people are filling Heaven with prayers on their behalf.

* Collin’s continued divine shield.

* Browyn’s counts! (Our friend finally has counts after transplanting a second time… what an amazing thing!)

* A truly magical day at the North Pole and the smiles and true joy it brought to our entire family.

* A healthy and smiling Jay!

Please pray….

* For the Sommer family (Sam’s family). Although his pain has ceased theirs is fresh and unrelenting.

* For Collin’s upcoming treatment- that he would not have any further eye issues and that he would not have major issues such as fluid in his lungs.

* That Collin’s health would continue to be good and that the divine shield around him would continue to hold strong.

* For Collin to be able to gain weight. He is maintaining his weight, but cannot seem to gain any. We know that he is having issues absorbing fats from previous stool studies, but they don’t want to do a huge workup and intervene until treatment is done and they have a more accurate assessment of this when he is not in treatment. Ultimately we’d love for there to not be any absorption issues when this is done and he would thrive and gain weight.

* That Tom and I would have the strength to get through all of these things that weigh on us daily. That we would have patience even when we feel like there isn’t any, that we would have energy, even when we’re tired, and that we can love on these kids like crazy despite our lack of these things due to the present circumstances.

* That I would be able to keep my eyes on God and not on the raging waters around me. That I would be encouraged and strengthen by the answered prayers we have already received and not be driven mad by the things that seek to devour me!

* That his cancer will NEVER return and that this experience can be used as an example to Collin and others of the power of God.

* For Browyn that her new cells would help her. That she would have minimal complications, for a continued shield to protect her and for her to heal completely without further complications- for the Leukemia to NEVER return.

* That our entire family will feel the nearness of God in our lives and that His power will be proved to us and to all around.

* That because of this trial in our lives, that there will be no one that will be able to doubt the absolute power of God in all of this. “For with God nothing shall be impossible.” Luke 1:37

* That this trial will help us and others learn lessons that will positively impact our lives forever- that we would gain many positives from this cancer experience and not lose any more than cancer already robs us of.

* That God would bless the countless people who have helped us and that we might somehow be a blessing to others as well during this time.

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Update 12/14/13 — 1 Comment

  1. Amanda, was so touched by your blog today! Wow, the kindess of others never ceases to amaze me! What wonderful memories for you and the boys!
    What a journey you have been on! We continue to pray for Colin and for you as his parents! The future is in God’s hands and that is where we want it to be, but the journey can be rough! Thankful for a God who comforts, encourages and is there for us ALL the time! The Lord will be a refuge for his people! Joel 3:16