Loose Screws

We can’t help but be frustrated.  We have spent the last month trying to get the next surgery date planned.  We know that if the trend has continued, the 3 remaining tumors are likely growing as we wait for a plan.  I started off slow and patient, showing as much possible respect as I could to the doctors and their teams and the process itself.  In the past week, I have felt I had no choice but to keep calling daily.  Communication amongst all of Mason’s doctors continues to be the hardest part to navigate as his parents.  I’ve lost count of the number of phone calls that I’ve had with doctors, nurse practitioners, nurses, and their receptionists.  And, while I feel that all of these people are excellent in their fields, they are still not working as a team and I am still their go-between.  Basically, our surgical team and our oncology team were completely on different pages and I had to let them each know this.  Oncology wanted surgery ASAP and surgery thought oncology wanted 2 more rounds of chemo first.  The problem with that is now we are stuck waiting even longer because operating room schedules fill up fast and again we are in need of a time slot that 2 different surgeons can be available on the same campus.  Even though I had conversations in person with 2 of the doctors today and the other doctor’s nurse via phone, we still don’t have a solid surgery date, not to mention surgical plan.

Today was the start of chemo again after our 2 1/2 weeks of wonderful time at home.  It was hard, to say the least, for any of us to walk into that hospital today.  For the first time ever, Mason was actually pretty sad and angry that he has to be there.  He even complained that the hospital doesn’t smell like home.  Poor kid.  I would love to have a pity party with him and be sad and angry too, but Matt and I tried our best to occupy his time with as much laughter as possible.  Even with his favorite nurse there today, he was just not happy to be there.  Who could possibly blame him at this point?  Not being able to swim, much less walk, doesn’t make for a very fun summer.  And, it doesn’t help that everyone keeps asking him if he has big summer plans.  Ummm, NO!  Unless you count living in a hospital with poison being pumped into you along with more pain and surgeries “big summer plans.”

So, while we were already frustrated going into today and working hard to make Mason’s day the best it could be, we were hit with more bad news.  Today’s x-Rays revealed that the screws that secure the carbon fiber plate to his tibia have already worked their way loose.  This would explain why physical therapy is excruciating for him and it’s likely that the exercises we have had to force him to do have worked the screws out.  Now, not only can he not do PT, but he has to be fitted for a splint, AND he has to be cut back open again to remove the carbon fiber plate and replace it with a metal plate that can be better formed to his bone.  However, we will no longer be able to see through the plate for potential tumor regrowth with it being metal.  All of the healing that has been done so far will be undone at a time when chemo is already slowing down any healing by killing new cells that are growing.  If we hadn’t already started the current round of chemo when this was discovered on the x-Ray, they would have fit him in for surgery today.  But, now, we must wait until he recovers from this chemo before he can handle any surgery.  Their plan is to do surgery on the femur and the tibia at the same time now, but not until mid to late July.  We’re likely looking at another lengthy surgery.

July 11, he will have all scans repeated and this will tell the surgeons what route to take for his femur.  He’ll either have an adult prosthetic put in to replace his proximal femur, or (if the chemo has actually shrunk the tumors) he will have a segmental resection done with only a graft and small plate.  The magnetic prosthetic that would have been able to grow with him is off the table now.  Once it reached production, we found out that the mechanism itself is approximately 7″ and it would be a poor decision to remove this much bone for an approximate 1″ area.

We also found out this week that our favorite oncologist is retiring at the end of the month.  He has been such a huge support to us and has walked us through this step by step very patiently from the very beginning.  This is the doctor who lets me text him even in the middle of the night if we have concerns.  He is the one who sat silently with us as I cried and answered the same questions repeatedly until we could wrap our heads around what we were dealing with.  He’s a good man and we are so happy for him, but it really stinks that he’s leaving us now.  He has, however, agreed to teach medical students and we are grateful that he will be imparting wisdom from his lifelong work into others who have so much to learn from him.

After spending close to 12 hours at the hospital, I came home tonight so I can work tomorrow.  Matt is staying and Mason is in great hands, but I still find it so hard to leave him there.  And, he hates it when I have to leave.  I’m so grateful that I love my job and that I have the flexibility to only work a couple of days a week.  I’m grateful for the distractions it provides and that I can feel useful there.  Most of all, I am grateful for the people I work with that provide constant support.  But, no matter what, it will just never feel right not being in the hospital when my child is.

If you are reading this, please stop and pray now.  Pray for wisdom and communication and scheduling.  Pray for strength and positive spirits and the ability to lean on God more than ever.

please pray

Possibly Half Way Done!

Quick update!  Our family is loving spending time under the same roof for multiple days in a row. It’s still pretty remarkable how much we love normalcy. Matt has completed so many projects around the house now that school is out. I’ve enjoyed being able to help him and live in our home together. I married a pretty great guy that I’ve missed tremendously.

Alli is enjoying sleeping a little more now that it’s summer and having fun with friends and cousins. She also loves irritating her brother. Mason is handling this round of chemo MUCH better than ever before. He hasn’t vomited one single time. He’s spent lots of time holding the emesis bag and preparing to vomit, but hasn’t once. Overall he’s doing so well. This past weekend, his ANC hit an all-time low and he had to be in isolation for several days. Today’s labs show that his numbers are headed back up. He has 4 days left of school this year and is hoping to be able to be there all four days.

Pray that he continues to bounce back and doesn’t end up needing another transfusion. He’s borderline right now on both platelets and hemoglobin. GIVE BLOOD if you don’t already. Someone else’s blood has saved our son’s life twice so far. We have no doubt he’ll need more as this journey continues. Pray that we have a surgery plan soon. Pray the chemo is working. We are on week 15 of 30ish IF all goes well.

Overdue Update

I know an update is overdue when I find myself saying the same things repeatedly. I last wrote the day after surgery which has now been over 3 weeks ago. Each day since surgery has gotten increasingly easier. But, not before reaching a whole new level of exhaustion. For the first time ever, I didn’t want to leave the hospital because even just going to the bathroom required 3 adults. I actually asked if a nurse could come home with us. They thought I was joking. Thankfully, my mom was willing and able to come and help. It didn’t hurt that she’s a great cook and recently retired RN of 35 years. And, she knows how to handle me when exhaustion and worry have brought me to tears. 24-hour care and pain management is just plain exhausting. Seeing Mason in pain and frustrated was heart breaking. But, we’ve come so far. He no longer needs pain medicine and really only hurts during physical therapy (which is mom or dad doing specific exercises with him twice a day). At first it was all he could do to wiggle his toes. Now he can flex his ankle and lift his leg on his own. One set of stitches is supposed to come out in the morning and the other set will dissolve. He has two scars from his knee to his ankle. He has at least 3 more weeks of bearing no weight on his right leg. He uses crutches for short distances – like across a room – and a wheelchair for everything else. It will take a while for his bone to fuse together and get thicker.

Here is the X-ray of his new leg. It’s pretty easy to see where the tibia has been removed.  If you look closely at the top and bottom, you can see the cut ends of the fibula.  He only has the very top and bottom still in place for the muscles to attach.  In the middle, there are 3 stripes. The first one from left to right is the carbon fiber plate and the next two are his fibula, folded in half, then cut and stuffed into the inside of the remaining ends of his tibia.  This surgery was a long 5 hours, but so far both surgeons are happy with the results.

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We’ve been in the hospital for most of the past 7 weeks with 1-3 day breaks here and there. We are supposed to get to come home for TWO WHOLE WEEKS tomorrow so that’s exciting. Now that summer is here, Matt is able to share nights at the hospital with me and I’ve been able to work a couple of days a week. It’s been good for all of us. I’m more refreshed after a day or two away. We each get to spend one on one time with both of the kids. But, it’s hard too. The first time I left Matt and Mason at the hospital and came home, I bawled. Mason and I have become so close that it just killed me to leave him. One positive outcome of cancer is that I know my son so much better than I ever did before. We definitely have a stronger bond now. It’s nice spending time with each of the kids separately. But, it totally stinks that Matt and I end up only seeing each other on the trade-offs. I’m grateful we can be a great team, but there is nothing more special right now than all four of us being under the same roof.

Besides exhaustion, the other reason I have not wanted to write is that we have continued to get bad news. It’s so hard for me to put bad news into words. When written they always become more true.

Chemo is not working as his doctors had hoped. At the time of surgery, 90% necrosis was expected and pathology only showed 20-30%. In 2 months, his primary tumor (tibia) had almost tripled in size. All of his tumors have become more aggressive. Even though biologically they still test out as low grade, they are, by all accounts, performing as high grade. He has stage 4 osteosarcoma. His oncologist said it’s more reasonable to say “when” the cancer metastasizes to his lungs than “if” because 90% of osteosarcoma patients end up with lung mets. He also told us that some people end up having to do 3 or 4 consecutive years of chemo before being in full remission. I honestly can’t even go there. We’ve been doing chemo for 14 weeks and it feels like an eternity.

The next surgery on his femur needs to happen as soon as possible because the tumors are so aggressive. But, we have to wait until his prosthetic is completed and shipped from the UK. We don’t know all of the details of this surgery yet. Today we had to complete another hour of X-rays because his surgeon has changed his mind on what would be best for Mason.

There are so many unknowns still. But, I can honestly say that I feel at peace with the decisions we’ve made so far as well as trusting that God’s plan is far greater than ours. We have to stay the course, continue advocating for our son, and remain positive.

Distractions, great people, and Legos have gotten us through a lot. THANK YOU to all of the people who have sent Legos and visited. Mason is so grateful and so are we.

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We actually got to be home on Memorial Day and enjoyed some family time.

imageKeep praying.