After a short 3 days at home, Nick went back for round 2 of his inpatient chemo on Tuesday, January 3rd. He didn't have to have any procedures that day so we just went right to check in and were sent to his room. This time around they gave him the maximum fluids during the entire stay. These fluids help his body clear the chemo out in a quicker amount of time. Unfortunately, instead of peeing every 2 hours he was peeing every 30-45 minutes instead. He gets very little sleep while on this chemo and is not pleased about it. He was able to meet the expected checkpoints for clearing and was able to leave on Saturday January 7th around noon. Sunday morning he woke up with excruciating pain, saying it hurt to breathe. After a call to the on call Oncologist we were instructed to take him to the Emergency Room at Primary Children's. After several hours there and a battery of tests, it was determined he had a Pulmonary Embolism - a blood clot in his left lung. He was readmitted and spent Sunday and Monday night in the hospital. He had to restart the Lovenox shots (blood thinning shots he gets every morning and night in his stomach) and the doctors needed to verify the dose was in a therapeutic range. They also wanted to make sure the pain while breathing was improving. He was very glad to come back home again on Wednesday for some much needed rest before his next round of inpatient chemo.
Going back on the Lovenox shots is a huge disappointment to say the least. The worst part being that we were told he will have to continue the shots for the duration of his three years of treatments now that it appears he has a clotting problem. That is a long time, it makes me sad. I can't help it. How is the kid suppose to have a life if he has to have a shot twice a day. I know, I know- diabetics have to give themselves shots. That provides me no solace- the kid has cancer- can we just deal with that. I just want the kid to have some quality of life and I am so stressed about how that is going to happen. He also has an issue called "Drop Foot"-a weakening of the muscles that allow for flexing the ankle and toes. He also has extensive nerve damage to is toes right now from a chemo that he has been getting intermittently, he can't feel or move some of his toes. He is doing physical therapy and will be getting some braces to wear on his legs to help keep the ankle muscle stretched. Now that he is getting some strength back and can get up and around better, we hope the "Drop Foot" issue will improve.
The fungal infection in Nick's eye is almost gone. He had an eye appointment last week while he was inpatient for chemo. The spleen on the other hand is still raging strong. The one indicator they use as a gauge tests something in his blood and it has always been to high to give a number reading, they just know its high. It remains high and until it can be read by that indicator he will continue to take the anti fungal meds he is on.
On the bright side he is fevering much less which I believe is contributing to his getting stronger. He is now getting around the house quite good on his own. He actually feels good enough to work on his Lego's for extended periods of time and play video games also, this is very important as it really helps boost his spirits. There have been months of sad days when he wanted so badly to build a Lego but felt to crummy to do so. He is sleeping better as well and has started sleeping downstairs in his own bedroom again. He use to not be able to walk up and down the stairs. These are some of the things Bryan and I relish. Little things to most, but huge for Nick.
Nick's fight is difficult. It is can be full of heartache and frustration, for every step forward it feels as though there is sometimes 3 steps back. This fight is long, the duration of his treatments are 3 years. It has been four months and they have honestly felt like 2 years. It is emotionally and physically draining on every single one of us.
A mothers heartache is unlike any other. I have never felt heartache until this journey, not this kind of heartache. The kind of heartache that just feels you with sadness, that makes your chest tight with anxiety. I feel so beaten down at times, like I can not possibly handle one more thing. But I must and I hope I can. My heart aches daily for my three children who I love more than anything. I have some pretty hard days emotionally- days that the sadness is hard to shake. I apologize to all my friends and neighbors that have had the unlucky chance to text or call me on one of these hard days. I am sure you were so glad you reached out! HA! The emotional side of me has always been guarded and kept private- the way I like it. I now have no control of the emotions - they come and go as they want, not as I desire.
My heart aches for Kate and Alex. I am so grateful that Kate has gymnastics to keep her busy, she has a sweet and compassionate heart. She has been in tears many a times for Nick, tears for his pain or sadness and tears for the Nick she remembers. I worry about her so much. I worry that at times my pain makes me unable to comfort her to the degree she needs to be comforted. Alex is a closed book, so difficult to read. He is an amazing young man, outstanding student and athlete. He has been a great comfort to me when I need a good hug, and the kid gives me the best goodbye hug every morning before school. He has been so kind to Nick- always offering to run and get him anything he wants
(slurpee or smoothie), he encourages Nick to play video games or build his Legos or try a bite of food. He is a sweet young man. He has had moments, like me, of pure anger- Why Nick? He is private about it, but I can see him hurting or sometimes he'll say something afterwards about being angry. I worry about him a lot. I hope he feels our love for him, I hope he believes me when I tell him how proud I am of him. I worry about him and Kate as much as I worry about Nick.
My heartaches daily for my Nick, now when I say my Nick- I am talking about my friendly, outgoing, kind, athletic, smart and funny Nick. I miss him, I miss watching him play soccer- he was amazing. I miss watching him play with Kate, the two of them were so cute together (now don't get me wrong they are the best of friends or the worst of enemies). I miss seeing him eat, yes eat. I miss seeing him shoot hoops in the basement or play ping pong. He is still funny when he feels like it, the jokes he shares make us all laugh our heads off. Just two nights ago he was doing this Ninja move with his IV medicine ball attached to him. He was swinging it around- totally freaking me out- but making me laugh so hard. I miss him! This journey is going to change us all but especially him. I know I will still love the Nick he becomes but I will always miss pieces of the Nick he was.
Monday, January 16, 2017
Tuesday, January 3, 2017
Have Hope!
Nick started his third phase of chemo Monday, December 19th. He'd had a really good weekend from the 16th till the 18th. He regained some strength and got out of the house for a movie, "Star Wars: Rouge One". It was the best Bryan and I had seen him physically since early October.
His appointment Monday consisted of a clinic visit to re access his port and a blood draw, he then met with his doctors. Afterwards we went downstairs to the Children's Procedure Center for his lumbar puncture and bone marrow aspirate. They called Bryan and I back about 35 minutes after he went in and Nick was already alert and looked the best he ever has after anesthesia. Again, a marked improvement over the several previous procedures with anesthesia!
Once Nick was done in recovery we were moved up to the cancer unit for his inpatient chemo. His treatments this phase (which run approx. 60 days) consist of an IV chemo that runs 24 hours. At the end of those 24 hours they start checking his blood to get it cleared from his system. The average patient clears in about 48 - 72 hours. Once the number is <.1 he is clear to go home! He repeats this process every other week for the 60 day duration.
Nick's chemo got started around 6 and finished up the following night just before 7. From there it became a waiting game. His number dropped ok the first check but then progressively got slower. In a 24 hour window he dropped from .36 to .31. It was frustrating to say the least. We learned this visit to not go in with any expectations, it was our down fall. We believed there was no way we would be there past Friday or Saturday ( Christmas Eve) at the latest. It took Nick 8 days to clear the chemo and 11 to get released. The poor kid suffered more than his share for sure. He got horrible mucositis which has been described to us as cankers times 100. He had sores in his mouth and down his throat and was in a lot of pain. One plus of being at the hospital is they have more options for the pain, he had IV morphine for a few days and had all his meds crushed and pushed through his feeding tube. He also threw up his feeding tube and had to have it reinserted. That was painful due to the throat sores. He finally got to come home Friday December 30th.
We celebrated our Christmas on Dec. 30th and then New Years Eve the following night. It was great to be home and all of us to be together!
It was a rough almost 2 weeks for sure. In those 2 weeks we got 2 pretty great pick me ups! 1. Nick's blood clot in his right arm is gone! YAY! No more shots twice a day in his belly. 2. The HUGE news is that his Bone Marrow Aspirate came back clean and clear. He is officially in REMISSION!
His treatment protocol is the same. He will still complete the full 3 years of treatments but it was a big relief to know its working. Nick had been so worried and it was a huge weight lifted to hear he was in remission. We all shed some serious tears of relief that day!
All in all we are thankful for HOPE! We keep saying all we have right now is hope! Hope he gets better, hope he can tolerate the treatments, hope we don't all go crazy, hope that in the end it all works out and HOPE is what carries us through the good and the bad!!
His appointment Monday consisted of a clinic visit to re access his port and a blood draw, he then met with his doctors. Afterwards we went downstairs to the Children's Procedure Center for his lumbar puncture and bone marrow aspirate. They called Bryan and I back about 35 minutes after he went in and Nick was already alert and looked the best he ever has after anesthesia. Again, a marked improvement over the several previous procedures with anesthesia!
Once Nick was done in recovery we were moved up to the cancer unit for his inpatient chemo. His treatments this phase (which run approx. 60 days) consist of an IV chemo that runs 24 hours. At the end of those 24 hours they start checking his blood to get it cleared from his system. The average patient clears in about 48 - 72 hours. Once the number is <.1 he is clear to go home! He repeats this process every other week for the 60 day duration.
Nick's chemo got started around 6 and finished up the following night just before 7. From there it became a waiting game. His number dropped ok the first check but then progressively got slower. In a 24 hour window he dropped from .36 to .31. It was frustrating to say the least. We learned this visit to not go in with any expectations, it was our down fall. We believed there was no way we would be there past Friday or Saturday ( Christmas Eve) at the latest. It took Nick 8 days to clear the chemo and 11 to get released. The poor kid suffered more than his share for sure. He got horrible mucositis which has been described to us as cankers times 100. He had sores in his mouth and down his throat and was in a lot of pain. One plus of being at the hospital is they have more options for the pain, he had IV morphine for a few days and had all his meds crushed and pushed through his feeding tube. He also threw up his feeding tube and had to have it reinserted. That was painful due to the throat sores. He finally got to come home Friday December 30th.
We celebrated our Christmas on Dec. 30th and then New Years Eve the following night. It was great to be home and all of us to be together!
It was a rough almost 2 weeks for sure. In those 2 weeks we got 2 pretty great pick me ups! 1. Nick's blood clot in his right arm is gone! YAY! No more shots twice a day in his belly. 2. The HUGE news is that his Bone Marrow Aspirate came back clean and clear. He is officially in REMISSION!
His treatment protocol is the same. He will still complete the full 3 years of treatments but it was a big relief to know its working. Nick had been so worried and it was a huge weight lifted to hear he was in remission. We all shed some serious tears of relief that day!
All in all we are thankful for HOPE! We keep saying all we have right now is hope! Hope he gets better, hope he can tolerate the treatments, hope we don't all go crazy, hope that in the end it all works out and HOPE is what carries us through the good and the bad!!
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