Update 6/22/13

Sorry I haven’t written again in a few days but when I’m home it seems like I don’t ever touch the computer because I’m so busy spending time with the boys and taking care of stuff here. As you read from the last note I wrote, Collin’s scans did not show any cancer in his body and neither did his bone marrow biopsy and aspirate that was done as well. So now that all the results are back I can breathe for just a moment. I am thankful beyond words for these huge answers to prayer. I know that this does not mean we’re out of the woods or that we’re done, but it is huge to know that his body has responded to chemo and that there is none lingering that they can see. As our oncologist said, this makes his prognosis better for the future- so this is a huge thing for us- but not for God thankfully. 🙂
So the day the scans came back we also talked to the doctors about our concerns with his hearing and proceeding to transplant. Thankfully we have amazing doctors that work with Collin and a God who is in control and they were able to find two other chemo drugs that have been used in Europe for 4-5 years and will also be on the new protocol in the U.S. soon. They will be using these two in place of the ones that can cause hearing damage. They have used these drugs before with other diagnosis and feel that these are the best for Collin considering his complications that he has had. There are trade-offs with these drugs though and that is that they will be a bit harder on his gut and have a bit of a greater risk of affecting his liver (however, the other ones affected that too.) He said unfortunately with chemo there is “no free meal ticket” with side effects, so we are having to choose ones over others and we are choosing to “play to his strengths” meaning we’re trying not to further damage his hearing and his kidneys. He also explained that during transplant there are antibiotics and other meds that they will need to give him to protect him from bacterial, fungal and viral infections that can cause hearing loss as well so they will be trying hard to keep that in mind. Our transplant doc explained that the kidneys and hearing have similar embryonic development (?) so basically that means whatever is going to be good for his kidneys is good for his hearing and they are going to be monitoring his kidneys very diligently. The doc says to be prepared to hear “a happy kidney is a healthy kidney” a lot because they will majorly be paying attention to them during transplant and super hydrating him as well to help with this. The road-map or schedule for his transplant now looks a bit different because he’s getting different drugs. We will be admitted Tuesday and they will start him on an anti-seizure medication because one of the chemo meds has major risks of seizures- however he’s never seen it due to the meds- so hopefully we won’t be the first. Then they will officially start chemo on Wed. If I remember correctly, he only gets one for an hour each day and one for a half hour and there aren’t as many days of rest between chemo and when they give him his stem cells back- I think it is only 24-48 hrs. after finishing chemo that he gets his cells. His counts will be nothing for approx. 10-12 days. During this time if he runs a fever (which I’m sure he will) he will be on a slew of antibiotics and other meds to try and keep him protected. During this time he will also have mucositis which he had this last round, however it will be really bad. They said to expect his mouth, throat and butt to have massive breakdown and sores and the lining of his stomach will be completely worn to nothing- which is when there is a high risk of bacteria leaking from his stomach into his blood stream. There are countless other complications and issues they will be monitoring, praying that the mucositis is the worst and only one. We also expressed concerns about pain control since he was very uncomfortable the last round and that isn’t even comparable to what they say he will have. He said that they will give him a PCA (pain pump) and countless other pain meds to try and keep it ok. He said there is no way he will be comfortable during those 10-12 days where he has no counts, but they will do their best to manage his pain. He also said if he needs to, he will transfer him to ICU just so they can up the pain meds to help him. He said pain is a major concern for them in this. Once his counts start to rise these issues will disappear like they did last time- but the time in between is going to be hard. He said that he would be okay with letting his sleep almost all day those days- because sleeping is better than awake and in pain. Those 10-12 days are the scariest part of this process, because his body has quite literally NO immunity to anything. So there is a good chance that the little boys will not be coming to visit and we will be limiting visitors during this time. Before during previous rounds the docs told us to be careful of bacterial infections with him, now a simple virus could kill him- so NO ONE is allowed in the room that even has a runny nose- including his parents. I’m sure Collin will be fine with this considering he would much rather be left alone when he’s not feeling good. I would love to say that once his counts recover he is in the clear, but the doctor said that he is still at significant risk of infections for 3-6 months after transplant. So later on when we get through this rough part- we’ll have to make some decisions about school and other places he should or shouldn’t go due to exposure. He will also be getting multiple transfusions during this time, which isn’t too different than he has done before, it will just be more since it will take his counts longer to recover. He said to expect to be in the hospital a minimum of 30-40 days- that being the optimal recovery time from transplant. If we are there longer than 40- he says it’s because he’s had complications. We are reasonably prepared for this as a family- thanks to the last long stay, but this will still be another very hard part in our journey- if not the hardest. One of the only fun parts of this for Collin is that for transplant we pretty much get to take over the room- so nurse Theresa suggested we decorate the room in a theme- so I bet you can guess what we picked- Spongebob! Ashley and Sharon were kind enough to put together a box for Collin and I also purchased some bedding so hopefully it will be a good distraction for him. He has no idea and won’t know anything until he enters his room on the day of admission. (Chrissy and or myself will be sneaking in a day early to decorate- the hospital staff is so awesome to plan that for us!) So I think that is the basic overview of what is to come….
We also met with the audiologist again and had his hearing retested and he again showed significant hearing loss in his high frequency registers. So he picked out his hearing aids that will go in his ear and the hearing aids that will go outside his ear. The nice thing is, there is a little LED light on the back that shows when the batteries need to be changed and he can put stickers on them to dress them up. He ordered a blue back that goes behind his ear and a red and blue swirled hearing aid for in his ear- Spiderman colors… so hopefully they will help him to think they are cool instead of be self conscious about them. I am a bit worried about the tole all of this takes mentally on him. Tonight we went to the park and I was again reminded of how hard all of these things are that we have grown accustomed to. Almost every kid in the park stopped and starred at Collin tonight and came up to him and asked him questions like “What is wrong with him?” “What is that thing in his nose?” “Why doesn’t he have any hair?” As much as I understand the questions that kids have and I don’t blame them, I also wish that he could just go to the park and play like a normal kid without getting questioned or starred at. He really wanted to just play with the kids there tonight but it was almost like they were too afraid to play with him because he had a nose tube and no hair. I want to shout- he’s a fun normal kid, who has to go through a whole ton of yucky stuff, please just be nice and play with him! I feel like the hearing aids are just another obvious scar that he will be left with once this is all done and I pray that makes him stronger instead of just more scared and alone as this process has already done enough damage to him…
Now to the positive stuff, we have been able to do some fun things lately. Thursday night Tom and I were able to go out to supper to celebrate our anniversary a bit early (as it’s June 23rd). We will be married 6 yrs. tomorrow. Seems like it has been a lot longer than that due to the many things we’ve had to go through in our six years. I pray that after this is all done, we will be able to see that even this has helped to strengthen our marriage. On Friday, Tom, Collin and I got the opportunity to go to our first Brewers game thanks to free tickets from the Children’s Hospital. Collin was pretty excited and didn’t totally get into the game- but loved the whole experience and someone was kind enough to give him a ball they had gotten from the game which was pretty special. Today, Collin got to meet with his “Make A Wish” granters and talk to them. There were three of them- two were married and then another lady. It was pretty cool because they came to the door with a dozen blue balloons for Collin and gifts for all the boys. Then they played with the boys, filled out paperwork with Tom and I and learned a bit more about our family. They were really nice and it was fun to see how easily Coop and Collin both opened up to them and played with them. Collin would really like to go to Disney World as well as do some other things in Florida like SeaWorld and collecting shells on the beach. 🙂 We are hoping to be able to do his wish once his CVL is out so that he can swim and enjoy everything without any restrictions for the first time in a long time! He’s very excited and tonight was already peppering me with questions about how the can make his wish come true. It was kinda cute. It will be a very cool experience for our entire family- first because we’ve never been on a trip like that as a family and second because it will be a time for us to just be together and celebrate getting through all of this. So cool to be able to look forward to that, and good for Collin going into transplant.
So not much else to write for now, hopefully I helped answer some questions about transplant and I pray that it helps you all to under more of what to pray for as we surely need it going ahead, and can’t help but marvel at prayers already answered- so keep them coming! My prayer has been that heaven will be filled with the prayers of many on Collin’s behalf. 🙂
p.s. People have been wondering if he can get mail at the hospital and the answer is yes- actually Tugg delivers it to him. I’ll put the address below.
Collin Anderson- Hot Unit
Children’s Hospital of Wisconsin
9000 W. Wisconsin Avenue
Wauwatosa, WI 53226
Thankful for…
* Our God who has unspeakable power and has helped us in countless ways throughout this journey- as a great and powerful God, a Healer, as a friend, and as a confidant who we can speak freely with about all our concerns, fears, and hopes.
* The many hundreds if not thousands who are continuously praying for Collin and our family on a consistent basis as well as sending cards of encouragement, financial support and little gifts that are bright spots for all of our kids.
* The countless prayers that have been visibly answered on Collin’s behalf and for the ones answered that are not as obvious to us yet.
* A little body that is currently cancer free. The thought is unreal to me and so amazing and a true testament to the power of our God and the loving and kind care of the medical staff.
* The wonderful time at home with our family. This time together is so precious- we’ve actually had meals together. 🙂
* The help that our families and friends have been able to provide to help us get through this. There is no way we will ever be able to repay them but we pray that God blesses them even more than we could ever hope to.
* Six years of being married- it hasn’t been easy in the least- but so thankful that God has brought us this far and pray for many more years to come where we are even stronger because of these experiences.
Please pray…
* That Collin’s pain would be manageable during transplant and that if it is too much for him, that he would be able to rest a lot so that he would not have to be in so much pain.
* That Collin would be divinely protected while his counts are bottomed out. That he would not have any complications and that his body would be free from infections that would cause him harm or even death.
* That the boys would continue to know that they are loved and adored even when we cannot be together as a family and that we would all be able to weather through this time apart.
* That Collin’s counts would recover quickly and that the chemo would not damage anything that is healthy but would ensure that the cancer never returns.
* That Collin would do alright with his new hearing aids and would not feel too self conscious about them- and that maybe he would even miraculously recover the hearing he has already lost.
* That Collin would feel the love of kids around him and know what it’s like to have friends who love him regardless of his differences. So thankful for his friends around here and his cousins that don’t treat him like he’s any different then them.
* That no matter what happens in this process that Collin would not be scared and would continue to know and be comforted by the presence of God.
* 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 after treatment is done that the cancer would be entirely gone from his body and that it would never return.
* 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.
* For all of the children who have been previously named in our prayer requests.
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Comments

Update 6/22/13 — 3 Comments

  1. I have tears in my eyes because I am so thankful for answered prayer, I have tears in my eyes for what lies ahead. My prayer for all of you sent with love! The Lord shall preserve you from all evil; The Lord shall preserve your going out and your coming in.

  2. Oh WOW!!!!! Our God is truly and AWESOME God!!!! So very, very happy for you. I trust our sons will meet someday. Collin is much talked about and prayed for among us and our 6 and 4 yr old. Keep On Keeping On!