I must apologize because I pleaded for a prayer request and I have been slow to post. I will start by saying WE HAVE CLEAR SCANS! We are thankful beyond words for another clear scan. I was as usual pretty nervous about the scans and this time we did not get them the same day because we had an appointment scheduled for the next day. Due to his scans needing contrast, he had to have an IV. One of the downfalls of not having a central line anymore is that they don’t have as easy of access. We had a nurse that was super fast and kind of no-nonsense so the IV went in really fast and it was done before he had time to get too upset about it. We also had an awesome visit from our neighbor and IR nurse Danette. She snuggled him and gave him heat packs for his IV which he said helped. (We are more than well taken care of!) They also drew labs when they put his IV in so we killed two birds with one stone. Thankfully I did get his bloodwork that day and I did see that all of his numbers for his regular blood work was in normal range. I did however see that his liver numbers were still a bit high, so that is something we discussed at our appointment on Wednesday. He did well on the scans. We were very fortunate to have Heather with us for our scans. She is as I probably mentioned before, a fabulous distraction for Collin and a great support for me on a nerve-wrecking day. We also had a GI appointment the day of his scans. We did get to do something fun that day though and our friend Abby had mentioned she might be able to get Collin into the lab where she works. I should probably explain that Abby works in a building attached to Children’s where they do research. He has been so interested in what she does ever since he first found out, so that day he got to see it up close and personal. He got to go into her research lab and wear a lab coat and watch her operate on rats. He loaded her with questions (as did mom) but it was a VERY cool distraction that day for both of us.
At the GI appointment we discussed Collin’s bowel progress. I started him on his pancreatic enzymes about a month ago. These pills have helped his bowels to be a bit more regulated. I had originally tried to give his body time to heal before starting him on the enzymes, but when we started school and things were still pretty bad I was desperate to try. So he now takes a pill will every meal and a 1/2 pill with snacks. This has decreased his bowel issues from 6-12 BM’s a day to 1-4. Obviously this has helped significantly, however we are all hoping that his pancreas is not permanently damaged from treatment and eventually he won’t need these. However, it is clear that right now he does need them. So our GI doc is consulting with another doc that deals more specifically with the pancreas and is getting back to me (hopefully soon) about how to proceed. He really would like to know if there is permanent damage and would like to know more from our surgeons and oncologists if they have a clear picture of what is causing his issues.
On Wednesday we met with his oncologist and obviously got our good news. Thankfully they know that as parents we don’t care about anything else until we get the results so that was the first thing they told us. After that a very large discussion took place where we discussed the other issues that we are left with now that treatment is done: his GI issues, his lingering eye issues, his higher liver numbers, and high iron levels in his bloodwork. I don’t usually write about it, but other than the main oncology clinic visits we also have to make regular visits to the optometrist (vision), audiologist (hearing), GI doc (stomach issues), and the pediatrician to catch up on all the vaccines that we now need to replace since his ones he’s had since he was a baby are now not valid due to his transplant.
The first issue that we discussed is the iron levels in his bloodwork. I mentioned his iron levels the last time we met with the oncologist too, but the last time she didn’t seem too concerned because the numbers had improved a lot since the first time they were checked. However after 3 months they should have improved again and hadn’t. The test that showed this though is not a conclusive test as it shows inflammation in a body as well and not just iron. So Collin is now scheduled to have further blood work to get a clearer picture of his iron levels and also for the GI doc. If his iron is truly high, we have two different options: chelation or blood wasting. I have done research of my own on chelation and was rather a bit excited this was an option as it has other positive affects in other areas as well, however, our doc made me aware that this option comes with it’s own set of risks- his hearing could get worse. The blood wasting means that they would draw blood every month and put him in a long term state of anemia so that his body would be forced to use the iron it has stored. Sounds like this might be the safer option, but I would like to discuss it further. We are going to just wait and watch his liver numbers for now. They are double what they are supposed to (at least his ALT is- his AST is finally in normal range.) She is okay with that number for now though. His mother however, is taking some natural steps to try and help this. He is currently doing a cleanse and has started taking curcumin as well as his usual list of vitamins and supplements I have him on. He also visits the chiropractor weekly as well (there are countless benefits to this that I won’t go into- but staying aligned really helps with a good immune system as well as many other benefits). We also discussed his ongoing eye dilation. If you remember from treatment his eyes got very dilated and he had to wear reading glasses. His right eye has gotten better in appearance although still sluggish, but his left eye is still noticeably dilated. In the study’s where this has happened, the eye issues have cleared in 6 months. So true to form, we are headed into new territory as we are now past 6 months without resolution. So will pray that they continue to resolve slowly but surely. Our oncologist also expressed a desire to look into his GI issues a bit more so we she will be consulting with the GI doc and they both will be getting back to me.
So long story short- we’ve come so far for which we are grateful beyond words, but still have some things to work out that are of some concern. When we know more of what is to come and what the tests show I will try and update everyone again. For now, we are enjoying our time together as a family and loving the smiles and the laughs (for which there are many!) Thank you for all who continue to think of us and pray. I can’t begin to tell you how much they are needed and appreciated by our family as well as others fighting through this journey!
* A God who is has great plans for us. (It even says so in the Bible). He doesn’t promise an easy walk, but He promises that we’re not alone and that He is in control.
* Clear scans- enough said.
* The astounding progress Browyn has made!
* So many wonderful times together with family and friends and as our own little family.
* So many smiles, laughs, snuggles, kisses, and love from 3 wonderfully crazy boys.
* Grandpa A’s clean bill of health!
* For Browyn- that her tests would come back good and clear her for another transplant- and prayerfully one that will totally eradicate this cancer that it may never return.
* For Collin’s various other health concerns- GI issues, iron overload, eye issues, and liver numbers.
* For continued strength for our family. For help to focus on God and the blessings we are currently experiencing and answers to prayer we have received, rather than focusing on the “what if’s”.
* 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.