Well no news is usually good news in our world… so the lack of a post lately means we’re having lots of fun. On Tuesday we went to the beach with Jennifer and the kids and had a lot of fun even though it rained. It was quite an adventure as the first beach we went to was shut down due to e coli levels being high. The kids didn’t seem to mind the rain at all as Collin and Megan searched for rocks and Jack and Cooper played in the sand and water. It was so nice to get out and nice to have a reminder of last summer when we got to play together on the beach as well before life was so complicated. It’s always funny listening to Collin and Megan in the back of the van go from chatty nicely to arguing and back again. Makes me laugh. The next day we had to go to clinic because they called and said that Collin needed to get an infectious disease blood test done, which he already had done but it was going to expire. It has to be done no sooner than 30 days before he gets his stem cells and because we have been out of the hospital so long, he had to have it done again. Yes- we have been out a while. A month in fact- it seems like forever since we’ve been admitted and I will say that because of this, this admission is a lot harder. It has been wonderful and “normal” for Collin to be home and for me as well, however, it just reminds me how in a 2 weeks he will be in a ton of pain and not even wanting to be awake, let alone out playing around. I’m also not looking forward to the restrictions this transplant will place on our lives. We already had a lot before, but now the boys will not be coming to the hospital for risk of infecting Collin with anything, and after we are released we will pretty much be quarantined to the house as the first 3-6 months after transplant are VERY risky for infections and other issues. Even a virus during this time could kill him.
Anyway, back to the positive stuff. Thursday we went back to Blue River for the day (where Tom is from). Tim and Becca were there with the girls as well and they all loved playing together. We haven’t been back there since October because I was due with Luke after that and Collin was diagnosed right after Luke was born, so going back was nice (it was Luke’s first time at Grandpa and Grandma Anderson’s house). Collin got to see the “new” park, ride on the 4 wheeler with uncle Tim, get a ride on the lawn mower with Grandpa, get pulled in the trailer, paint the fort in the garage and split and load wood. All of these things he’s been asking to do for months- so his grandparents tried to cram all of it into one day. Which was perfect- needless to say we had really tired boys on the way home. The drive home was pretty cool last night because everywhere you looked after 9 there were fireworks. We probably saw 10-15 different firework shows and we got off the interstate just in time to watch ours in Waukesha. Today we filled up their pool in the backyard since it was a pretty warm day and we also went to the library. The process of filling the pool up was kind of funny as Coop stood in it and splashed around forever and Collin ran around trying to catch butterflies with his net (he successfully caught one too!) Tonight Collin got what he requested and we had ravioli with chicken for supper. He is such a good eater when we are home and it’s been proven in the numbers because he has gained 3-4 pounds this month we’ve been home which is a great place to be going into transplant where he will not have his feeds or food when he has mucositis. So overall, a lot of fun has been had the last few days. The weekend will probably be like that as well. So all in all, no complaints from this mom, just lots of smiles.
It will be weird going back to the hospital on Monday because I’m so used to doing all of my stuff at home now and once we get there it is all the nurses again (at least on the medical end), that does not mean I get to relax… but it does mean that they take care of his IVs, meds, and feeds. It takes me 20-30 minutes every night just to get all of his stuff ready. He has feeds that need to be mixed and his feed pump set up, his IV bag that needs to be changed and programed, his lines that need to be cleaned and flushed, and his meds (right now Zantac and Meletonin but on the weekends more) that need to be administered. It will also be interesting getting used to the hospital routine again, but am sure that will only take a day as we have lived there for 6 months already. But for now we will enjoy the last few days we have together as a family for a bit and will take lots of pictures and relish the smiles, laughter, and love.
Thank you for all who continue to pray and please don’t cease now as we are headed into another huge battle- I’d say arguably the largest one for Collin himself as he will have to deal with weeks of pretty intense pain and low numbers. So all prayers are needed and appreciated. I’ll include the hospital address again in case you’re interested- I’m hoping that once everyone gets their t-shirts they could send a picture of themselves in them so we can hang them on the wall of his room. 🙂 Or even if you didn’t order one, you could send one of yourselves so he knows how many people are supporting and praying for him as he’ll really need encouragement and extra love this time around.
Children’s Hospital of Wisconsin
9000 W. Wisconsin Avenue
Wauwatosa, WI 53226
* A God who is with us in good times and bad- interesting that my verse on my phone yesterday was “For He that is mighty hath done to me great things; and holy is His name” Luke 1:49. (Apparently Luke 1 has a lot of amazing verses…)
* Some wonderful memories made during the time we’ve been out of the hospital.
* Collin gaining weight and eating well while he has been home.
* Smiles from all of the boys and the feeling of a “normal” life for even a brief time.
* The continued prayers of many- PLEASE keep them coming.
* 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 and specifically for Sam at this time who’s now starting another new treatment to try and put his Leukemia into remission so that he can have a bone marrow transplant. He was in remission once and now they can’t seem to get rid of it.