Gavin Pierson's Journal
Swelling around shunt
Written 6 hours agoGavin seemed a little more tired today, and after seeing his counts that were checked yesterday, they do not explain tiredness. His eyes seem to roll up easily as if he is very tired, he is forgetting more easily and he has some swelling on his forehead and also back of his head by his shunt. Talked to Dr. Petronio and here is the plan...
Gav has been on a steroid wean and Dr. P thinks the last few days of a wean have gone a little fast. Yesterday Gav was at 2 mg twice a day and today 1 mg twice a day. He feels that a 50% change is too much. Gav had 1 mg this morning and I just gave him 2 mg. Tomorrow I will give 2 mg twice just to hold the current dose. Then Monday Gavin will go in for a scan. If he gets worse we will need to bring him in before then.
My fear is the shunt is not working - because of the fluid near it and the spongy feeling around it and his forehead. This may mean a shunt externalization or revision. If the scans show that we will be admitted and will miss Christmas. I feel like I could say with over 90% certainty we will be admitted Monday and will miss it. There is a small chance I am wrong I guess, but why the swelling and fatigue?
He does not complain. Usually until things are VERY bad. He says he feels fine, no pain, no headache. However, the physical signs tell me there is something going on. It is hard to have such a tough kid in times like these because we don't know until it is late in the game and is an emergency. Besides worrying about Gav, It has been a rough day for our family. Last night, my dear aunt was hit by a car and killed. She prayed so much for Gavin and had the biggest heart. I am still in shock... and my heart hurts. My only calm is knowing she is with God and with her husband, my uncle Bob who passed away last year. Please pray for our family.
Written Dec 19, 2013 10:36pmToday we met with the dr about getting AFOs (Ankle and Foot Orthotics) to help Gavin walk better. He is designing them specifically for Gavin, allowing more fluid walking pattern, no locked knees and also to help compensate for his gait. This should all help Gavin's joints and muscles improve. They are very flexible and he can even run in them. He chose to get Batman design - they are going to look pretty cool! He goes in next Thursday to get them and get fitted. Good thing we have insurance, and that we got the order in before the new year, new deductible starts... They are $5000! I couldn't believe that. Wow.
Lots of appts coming up. Gav has PT Monday, another appt for the AFOs Thursday and then Friday he has an ophthalmologist appt to check his eye movement, acuity, field of vision, etc... The following week (week of Dec. 30) is also busy Tuesday is PT, MRI/MRV, neurosurgery appt. Thursday is PT, HemOnc appt. When he has the scans on Dec. 31, it will have been abut 40 days since the clot was found, so PRAYING that it is starting to dissolve. As I have mentioned, the earliest this would happen is 3-4 weeks, so it is very possible it will be better. Also, he is off Palbociclib right now and we are waiting to restart until we see some resolve with the clot - but I worry that Joe Bully could grow without the Palbo... So praying that does not happen.
The best news we could get is that the clot is getting smaller, the tumor is stable and that Dr. P wants to schedule the next laser ablation surgery. He mentioned that as soon as the clot is under control he wants to do this again soon. It would be SUCH a blessing to have all of this happen the way we hope it does. However, we know better - and know how to hope for the best and be prepared for the worst. We will choose to assume the best until we know, but also be ready for results like the tumor grew while off Palbo, the clot is the same and has not started to resolve, and we cannot start Palbo or plan the laser ablation... NOT what I want to hear, but it is a reality that we may hear it.
We have no control over what results we will get. So we live today, we do what we can about what we can. I struggle with not knowing - it is really hard. Today for some reason a memory popped into my head (speaking of control...). I remember one night, talking with Steve before Gage was born. I remember us ignorantly discussing how blessed we were to have healthy kids (Grace and Gavin) and how we hoped for a third healthy child. We worried about how hard that would be if our third had medical issues or special needs, and how it would take away from our other kids lives, and how we could never be truly happy, etc... Once Gage was born, healthy, we thought we were "safe". Almost 6 years after having a healthy baby - Gavin - boom, a brain tumor. Just like that - our "safe" has never returned. It never will.
However - who I am today is not worse than before - it is different. I will never have my "safe" again but when I lost that I also lost ignorance, judgemental thoughts, pettiness, regret. I gained hope, perseverance, an open mind, many many new perspectives and so much more. I wish my little boy did not have to teach me these things, and I am sad about his pain, all that he has missed, and more. But he is still Gavin, and I just started to see him re-emerge from all of the treatment this summer and fall until recently - and I know I will see him again. Through the new "I'm on steroids" look, I still see him. Every time I get sad or start thinking about the million things I could be depressed about, I replace it with the amazing things Gavin has done, and does every day with a smile on his face. We assumed that because our children were born healthy - their life would be easy. Truth is, everyone will face really hard things. How you deal with them is up to you. We thought we wouldn't be able to do this - to be parents of a sick child, but here we are. Don't over control your life - don't assume you are safe from hard times - just live right now and choose hope over fear.
Every night I sit next to all of my children and kiss them, hold their hand, pray for them. I usually sit by Gav a few extra moments and I am in awe of him. I watch him breathe and thank God that he is alive. I relive the pain after hearing he had a few months to live. I think about all that this tumor has made difficult for him, I think about how strong and brave he is, and how he never gives up. I think about all of the things we can do to help him improve his life once we get rid of this monster. I pray - not for a perfect life without difficulty and road blocks - but for one of joy despite them, and for Gavin to be happy. Thank you God for answering my prayers.
Written Dec 19, 2013 10:35amYesterday at Gavs PT appt, I asked the therapist about orthotics. I was already going to mention this about a month ago, as his ankles twist inward slightly causing him to lock his knees when walking... Well, with the new weakness and weight gain, it has gotten worse. Today we are going to Minneapolis for an orthotics appointment. I think they will mold him some type of brace for his ankles to wear. This should help allign his ankles.
Homecare is coming at 12:30 for labs, catheter switch (for blood thinner injections) and PICC line dressing change. After that we will head to Minneapolis, as Gavs appt is at 2 pm.
Yesterday our family felt pretty loved :) The St. Paul Police Dept adopted our family and bought many presents for all of us to put under the tree, already wrapped and ready for Christmas! This is such a huge relief, that during this financially hard time, the kids will not feel it. Later in the day, my sister Laura and her boss Kristen from Coon Rapids Walgreens came over with more wrapped presents for our family! Thank you St. Paul PD and Walgreens for your generosity!!! When Steve got home from gymnastics with Grace and Gage, he brought an envelope from Jam Hops with target cards, gas cards and money donated from our Jam Hops family! Thank you for always thinking of us Jam Hops, you mean so much to us!
On we go, as we get ready for our busy afternoon. As Gavin says, Be happy :)