Update 2/28/14

I know it has been a while since the last time I posted. In some ways that is because things have been quiet and in some ways not. I’d say for the most part things have been “quiet” with Collin and being home. We’ve been able to do a few normal things include going to the library which was fun. He has done a lot of school lately- we are hoping that he will return to school (he’s been doing home-school through the district) after our wish trip.

Some other fun things we’ve been able to do is spend some time with our families. Two weeks ago my family came to visit and mom got really BRAVE and decided to plan a trip to Flabbergast for the boys and Amy and Charlie. Flabbergast has a lot of blow up play things like a bouncy house and games that use tokens like Chuckie Cheese. The kids had a blast and Collin did not contract anything…. however there were mom rules going in which included making sure his hands never entered his nose or mouth and he got a thorough shower when we got home. We also took the kids sledding that day which was a lot of fun.

The next weekend we took a trip to Blue River for two reasons: it was Grandma Anderson’s, Auntie Charl, and Auntie Becca’s birthday’s so we went to surprise grandma and Charl. We also went because on Wednesday of last week, my grandma passed away after a long battle with Dementia and the funeral was on Sunday in Darlington, WI. The weekend was great and the boys loved the time at Grandpa and Grandma’s- the boys were especially excited because they had baked a special cake for Grandma and Charl and picked out presents and flowers and were SO excited to give them to them. The weekend got even more exciting for them when Tim and Becca showed up with the other grandkids and a whole bunch of fun happened. On Sunday, Grandma’s funeral went really well. Her relationship with God was emphasized and remembered and the fact that she was a loving mom and grandma. All of the cousins (with the exception of one) were at the funeral and that is the first time we’ve all been together since my wedding almost 7 years ago. The occasion to get together was sad, but it was wonderful seeing everyone and getting to hang out for a bit. Grandma will be missed but it is so comforting to know that we will see her again and that she is no longer in pain or unable to communicate.

Another exciting thing for Collin (and the rest of us) is a special visit from my Aunt Wendy and cousin JJ. JJ is really great playing with Collin and the other boys and when we talked about this visit a long time ago we were hoping it would be a fun way to wrap up treatment. So this was the perfect time since he’s heading into his last round and feeling pretty well. They’ve been busy running around, playing games, hanging out downstairs and just being crazy! The boys are really loving it!

Now for Collin’s medical stuff…. the past few weeks have not been as quiet that way. The Sunday after Collin was released from the hospital we ended up back in the ER. We had gone to church that night and his face looked a bit weird going but I just chalked it up to him being tired. However, when I took him to the bathroom he was complaining of his lip hurting which I originally though was chapped lips. Then he suddenly started crying and saying it really hurt so I looked and couldn’t see anything. He calmed down a bit and I took him back in and ended up taking Coop out for a bit because he was being “challenging”. I took him back in after he had settled down and looked at Collin and my heart just dropped into my feet. His entire bottom lip was severely swollen and his eyebrows were starting to swell really bad. I ran up really fast to my friend Jennifer and asked her if she had Benedryl- but go figure that was the one night neither of us had anything so we ran to the nearest Walgreens while I called the hospital. At that point I didn’t know if we’d have to call 911 or what, but it seemed to stop getting worse in the van so that is why we ended up not calling. So I gave him Benedryl and Jennifer monitored him and we drove back to get Tom and the boys. On the way home Tom rode back with him and in the dark couldn’t tell it was getting worse. We got home and I took one look at him and was back on the phone to the hospital because his upper lip was now hanging over his lower one and his eyes were worse. He was also getting a bit red. Nurse Kris (our primary night nurse) was charge nurse that night thankfully and we got to chat with her and she said we could give him one of his anti-nausea meds as it also helps with allergies (who knew!). We waited about 30 minutes after giving it to him to see his reaction and I called her back when I noticed he was now itching his head and neck and I had exhausted all of my resources. So she said to bring him in. By the time we got to the ER, his entire face had huge red patches on it. Needless to say he was evaluated pretty fast and they gave him another dose of Benedryl, Zantac (which is usually used for reflux but helps with this I guess) and steroids. After 3 hours of close monitoring and observation we were able to go home. I racked my mind over what could have caused the allergy. Tom has severe allergies to fish and maybe something else that have caused a reaction like this before, but I coudln’t think of a single thing Collin had eaten or done that day that was different. The only thing I could think of was that I gave him his shot late that day at 6:20 p.m. and he had a full blown reaction by 7:45. He’s had this shot if you remember for almost 40 days total with rounds 1,3, and 5 of antibody. So I didn’t think it was that at first, but then I was thinking about how we were in ER the week before because his arm was really swollen. We had switched the arm we gave the shot in and it seemed to swell as well but not as bad. So the next day we happened to have clinic which was good, and when I told them about the reaction and showed them the picture they immediately pulled him off of it. I thought maybe they’d want to try one and monitor him but they didn’t even want to take the chance. Found out afterward that we were fortunate that this reaction occurred at the end of his last round of the antibody because otherwise there are things that happened that could have disqualified him from the study (the allergic reaction and the fact that they gave him steroids…). So that was definitely scary but thankful we were able to finish the antibody even if we couldn’t finish the shots.

Collin has been doing really well lately with eating. In fact, yesterday in clinic we officially reached a new goal- he now weighs more than he did when he was diagnosed! He weighed in at almost 41 pounds yesterday! Which still puts him in a low percentile for his age, but he is finally on the charts! Just think, 8 months ago he weighed 32 pounds…. so he’s almost put on a pound a month so to speak. (Really that weight has happened since he started antibody treatment and has really started to go since he finished his last one almost a month ago. Collin’s bowels still leave a lot to be desired though because this week he was in the bathroom more times than I can even count. So please continue to pray for healing of his bowels. We have an appointment scheduled with a GI doc in the next few weeks to really start to figure out if this condition is life-long as a result of treatment, or if it’s something they can help him with. The next few months off treatment will really tell us if this will be able to return back to normal. His eyes did get worse this past round (well technically his left eye got worse again) so he will have to continue to wear his adult sized reading glasses until this problem resolves because his vision is still blurry. He doesn’t really mind though because he LOVES the glasses- go figure- but his parents and doctors would really like his eyes to return to normal. So we have another follow up with the eye doctor as well coming up. We also have another appointment with the audiologist coming up to check the status of his hearing. The last time we had the hearing test done they said his hearing had gotten 10% worse, but he was also really tired coming off of transplant so she wanted to retest him. He hasn’t worn his hearing aids since the 2nd round of antibody because they kept having to be taken out and put back in. So if he is still low at this exam, we will be working hard to get him to wear these full time, especially with him going back to school.

Collin starts his official LAST round of treatment (not antibody- but part of the antibody therapy) on March 10th. He will do this for two weeks and then we should be done from my understanding. This is followed by a full work-up of tests and scans on the week of March 24th. So we plead for your prayers concerning these scans because this is HUGE. He does not have to have a Bone Marrow Biopsy and Aspirate this time because his bone marrow has been completely clear on the last two times they have done this, so one less test which is good. He will have an MIBG scan which is specific to Neuroblastoma and a CT scan. I’m not sure what other tests he has, but those two for sure. Then his CVL line will be removed the week after scans assuming everything is clear. This means that for the first time in a year and a half, Collin will prayerfully be free of all tubes and will be able to take a bath without fear and swim. He is SO excited to be able to swim and I’m sure we will do a lot of it this summer if we are blessed enough to continue to be cancer-free. This also means that he will be able to swim for his Make-A-Wish trip to Disney. We will either be going over Easter weekend or on the week after Chrissy finishes her finals and she is coming too to help with the kids and to have fun with us since she’s been such a huge part of his treatment.

Even though we are hopefully coming to the end of Collin’s treatment for his cancer we still crave your prayers that his cancer would never return (or any other form) and that his other issues created by his treatment would resolve or be more manageable. We also crave prayers for our friends. Please continue to pray for our friend Browyn. Please pray that God would give her and her family strength and peace. We will continue to pray as well that she would be cured of this cancer- we won’t cease in praying for this because “For with God NOTHING shall be impossible”. God is not confined by medicine or probabilities or statistics- He is all-powerful. If this is not His will, please pray that Browyn will not be scared and will be overwhelmed with the love of God and His nearness. We also ask for prayer for our little friend Jay. We have written about him so often and hold him dear to our hearts. He had an MRI on Friday of last week and we found out today that he will have another one on Monday because they saw something on his liver. Monday’s MRI will be to try and confirm if that spot is damage from transplant or his Neuroblastoma coming back. Please pray as well for one of our other Neuroblastoma friends Leah. She started her “hard” round of antibody this week and within a day it had to be stopped because she was really struggling with low blood pressures, fluid in her lungs and a few other issues. It does sound like she is making progress, but like Collin her recovery from this round is not as fast as they say it will happen and definitely not easy as she was taken to ICU in the middle of the night Monday. Our friend Gabe that also has Neuroblastoma still has spots in his bones moving into his last phase so please pray that this treatment will get rid of this ugly disease for good. In our world it seems like things go in waves. There seems to be silence or calm for a bit and then everything seems to storm. So thankful that we can pray to a God that hears, because we could not do it without God.

We were able to drop off 26 hats and 11 parent care packages to the unit on Wednesday which was really nice. Thank you to all who have helped donate to this cause and please keep us in mind if you have a few spare dollars to spend at the dollar store or wherever. We are always in need of items. After making the care packages this week we are in need of men’s/women’s body wash, women’s shaving cream, chapstick, gum, and we DESPERATELY need cash to purchase the hospital coffee shop gift cards. If you would feel more comfortable donating cash you could write the check directly to Seven Sisters/Cafe West and send it here so I can use it to purchase gift cards for the care packages. (If you have other things you’d like to send as well that would be great too! I’ll include the list of things included in the care packages again.) I’m also always looking for thick yarn to use in making the hats. Thank you SO much for you help, support, and donations!
Care Packages include:
1. Toothbrush
2. Toothpaste
3. Floss
4. Chapstick
5. Deodorant
6. Razor
7. Shaving Cream
8. Shampoo & Conditioner
9. Body Wash
10. Luffa (flowery looking shower thing)
11. Mouthwash
12. Bar Soap
13. Hand Sanitizer
14. Gum
15. $5 Hospital Gift card
16. A list of helpful hints for parents for diagnosis/hospital stays.
17. A “Courageous Collin” card to give the parents access to his website as well as the website for Facebook in case they want to post their pictures or stories or just check us out.

Thankful for…
* A God who is NOT confined by medicine or my own ability to decipher His will. A God who is an almighty comforter, healer, Father, friend, and so many more attributes that I can’t even begin to describe.
* A God who hears our prayers- even the ones unspoken- who knows us better than we know ourselves.
* Collin’s weight gain and overall better health.
* The end of treatment being in sight.
* More time at home as a family and more time to spend with our extended family.
* My Grandma’s awesome legacy of faith and being able to see most of my dad’s side of the family.
* The people that don’t cease to pray on Collin’s behalf and our friends. We all truly need it and appreciate it more than we will ever be able to express.
* The kindness of others during this process and even now knowing that even though we are close to being done we will never really be done with all of this. Your prayers, thoughts, cards, food, and financial support have been and still continue to be a huge blessing to us as a family.
* Time spent with family over the last few weeks.

Please pray…
* For Browyn and her family. That her parents may have strength for the journey ahead. That they may feel the love and presence of God in a real and undeniable way- that they may have peace in a journey that daily plagues us with helplessness and unrest. That Browyn may know God’s love and feel His presence- that she may not be fearful of what lies ahead but loved by God and her family. Also for continued strength to fight infections , for her continued health, for containment of her blast cells, her possible future transplant, and her suffering.
* For Londyn’s family as well as Sam’s family- whose grief is fresh from the loss of their children/sibling.
* For our friend Renae who just had another bone marrow pull and blood tests and things are looking really well in a situation that seemed so bleak a few weeks ago.
* For Evan (10), Olivia (1), Will (2), Gabe (almost 3) and Leah (5), (both have Neuroblastoma), and so many other friends on the floor that are in various different stages of treatment. That they would be protected and given strength through this process.
* For our friends Cheyenne, and Jay (and many others) that their cancer would never return to their bodies and that they may live long and healthy lives that are a blessing unto God. 🙂 That they would continue to have a divine shield to protect them and that they would continue to heal from treatment without further complications.
* That Collin’s bowels would return back to normal- he is still having a hard time with them. Most days he has bowel issues 3-5 times a day, but some days in can be upwards of 10-12 times.
* 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 continue to gain weight and strength.
* For Collin’s liver- that after treatment has finished that it would recover and not have any extra damage from all of the treatments he has received. This is a rather large concern since his numbers are holding right now because of the antibiotic he is on, once they pull it his numbers could sky rocket and if they do we are looking at a liver biopsy and who knows what else.
( The 7 are always on our prayer list- but that doesn’t mean they are any less important than the day we first put them on… in fact if anything the importance of these prayers is even more evident…)
* 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.
* 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.

* The pictures are of Collin’s rather “beautiful” face during his allergic reaction, a picture of my Grandma with Collin when he was little, the hats and care packages we took to the hospital, Collin crazy hair (he has a lot of it now), building snowmen and Collin climbing the tree (if you look close you’ll see him), and the boys making Grandma and Charl’s cake.

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Update 2/28/14 — 3 Comments

  1. Thanks for the update Amanda-it is so awesome to hear Collin is able to enjoy some fun! He looks great! Always great to read your updates, you are so faithful, bless you for it!

    Always in our prayers-
    The Breining family

  2. We don’t forget about praying for Collin and all the family…so thankful you are able to enjoy some fun and games!!!! Thanks for sharing so much again and the pictures!!!! You are being a blessing to so many, which is the very reason He put you were you are….and you have been faithful….

  3. Thanks for the update Amanda! So happy that Colin is doing so much better, eating well and gaining weight! Praying along with you for all your requests to the God who loves to answer prayer!