Good Evening!
As I look out the window and see the leaves starting to change, I realize that the last update I sent was almost three months ago. The kids were just finishing their last days of school and we were all getting ready for our summer vacations. I hope that you all had a wonderful summer and found time to relax.
It has been three months and 5 days since Nathan underwent the surgery to resect his brain tumor. At that time, they were able to remove approximately 80% of the tumor. The part that is left is in the medulla itself and can not be surgically removed. Throughout the past few months, he has had a few bumps along the way, but overall has been very healthy. He continues to receive 100% of his nutrition through a GJ feeding tube in his stomach. He had a surgery last week to replace the initial one he received in June with the "Cadillac" version that he has now. He is able to bathe and swim with this one where he was not able to do that with the first tube. On July 20th, he passed part of his swallow study. He is now allowed to take thickened baby food by mouth. He loves all veggies!!! Nathan's physical development has also improved drastically since the surgery. He does three days of physical therapy a week and one day of occupational therapy. He is making great strides and continues to shock us with his rapid progression. He is a strong little boy and fights hard every day to get stronger and healthier. Our days are busy with therapy and doctor's appointments, but he just goes with the flow and continues to share his beautiful smile with everyone but the "white coat people." He still does not care for them very much!
This past Friday Nathan went under general anesthesia again to receive his first MRI scan since the surgery. We will do these scans every three months for as long as the tumor is still there. We were hopeful that the tumor had not grown, but unfortunately that is not the case. Throughout the past few weeks, we have been seeing signs that the tumor was starting to impact him again. We went in for our normal clinic appointment with the oncologist today and she gave us the news thatNathan's tumor has grown within the medulla itself and there is a slight growth outside the medulla that is pushing on the cerebellum. She informed us that at this point we need to start chemotherapy. As you can imagine, our hearts sunk. As a parent, you do whatever you have to to keep your child healthy and safe, but this was one thing that I was dreading. He has been doing so well and the last thing I wanted for him was to put him through chemo. So within a few minutes, the IV team came to place the IV, they checked his blood counts and we learned a whole new part of the hospital yet again...the infusion room. Nathanreceived his first round of chemo today and he did exceptionally well. It takes about 4 hours and it is all administered through an IV at this point. He will receive treatments once a month for the next 12 months. At that point, we will reevaluate the appropriate course of action based on the growth of the tumor. If he is unable to tolerate this form of chemo or develops an allergic reaction, we will have to move to a form that he will need to get once a week. At that point, he would need a metaport to be surgically placed for easier access. He is home playing now with his grandparents. You would never know this little 11 month old just had his first round of chemotherapy.
On June 2nd, we received the diagnosis that Nathan had a brain tumor. We thought we would never be able to handle this challenge. Nathangave us one look and we got through that dreaded night. On June 5th, we sat and waited while our little guy went through an 8 hour brain surgery to remove a tumor. We never thought we could get through that...but when Nathan woke up and shook the rattle, we new we would get through it. When they told us Nathan could not drink from the bottle anymore and would need a feeding tube placed in his stomach, our hearts dropped because we just wanted our baby to be able to eat and enjoy food. Once again Nathan fought and passed part of the study to allow him to take some food by mouth. Well today was another one of those days. When the doctor looked at us and told us our little boy would need to start receiving chemotherapy, our balloon was deflated once again. Well, Nathan didn't let us mope too long. After the IV was placed, he was busy playing with his toys, smiling, and giving us all a little kick in the butt to perk up and smile. He is our inspiration, our strength, our hero. I know Nathan will make it through any challenge those "white coat people" put him through. Although Mike and I want to just sit and be sad at times...that is just not going to happen with this little boy. He is ready to fight and we will be right by his side every step of the way. Through sleepless nights, long days at the hospital, and now chemo...we are in it to win!
Well, I must start recruiting your help again. We know you all have one friend in a very high place that keeps our Nathan safe. Please continue to pray that Nathan tolerates his treatments and does not need to go to a once a week plan. Please pray that the tumor responds to the treatment and does not continue to grow. Please pray for our strength to help him through whatever he needs. You have been our support that helps us to get through each day. We can not thank you enough! It is a little ironic that the same day that Nathan had his MRI was also the same day that the fund we started in his name at children's hit the $10,000 mark. We know those generous donations are going to help our kids to receive the best care possible. Everyone at the hospital is shocked that so much money was donated in such a short amount of time. They have all commented on how wonderful our friends and family are. We always say that you are the reason we are getting through this. We have an amazing support system. Thank you!
Much love,
Beth, Mike, and Nathan
Nathan's first chemotherapy treatment
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