Thursday, August 28, 2014

August 28, 2014

Today is a day we have fretted over the past 2 weeks, but finally we were able to meet with Dr. Dauser, the neurosurgeon that will be operating on Bennett next Thursday, a week from today. He met us with smiles; results of previous surgeries; and addressed us with all of the risks and potential outcomes that can arise from this surgery. He wwas confident that he could tackle this task of healing our son one step at a time, so Randy and I are extremely lucky and relieved that he will be the one guiding that knife as they start this new journey for us. From what he did tell us, we will have to be at the TCH Main Campus at 6am, Thursday, September 4th to check-in. Surgery will start around 7am, and then he said the surgery itself will take around 6-7 hours, depending on how much of the tumor and cysts they can remove without harming Bennett. He said it is one of the most difficult and tedious surgeries that he has to perform, so he needs to make the best decisions he can to ensure Bennett's safety. You can assume that Randy and I will be walking the waiting room awaiting the results. He will most likely stay at least 24 hours after in PICU (Pediatric Intensive Care Unit) before moving us up to a room, surgery recovery in hospital will be around a week, once released we will then, and then will be home for 3-4 weeks before we can go back to school. Because of this, I have been able to leave work by my boss (He amazing and I am so lucky to have such an understanding employer) to stay at home full time while Bennett recovers. We know that we will get many texts, emails, FB posts and calls awaiting an update on how he is doing, so please know that we will get back to you when we can and that we appreciate all of the prayers and support. We will not know how the surgery will effect Bennett on his recovery, so that will be a waiting game until he chooses to get back in action! We will keep every posted as he departs for surgery next Thursday…until then…-Mommy Nester

Tuesday, August 12, 2014

August 11, 2014

Looks like we celebrated a little too early. We got the results back from his MRI today, and lets just say we are both and shock and feel blindsided. The MRI showed that the tumor had significantly grown in the past 3 months. Typically his tumor in the past had grown only slightly (as in millimeters) at a time, so there doctors were not concerned. But now in a 3 month time frame his tumor grew from 4.3cm to 5cm. The doctors are highly alarmed and want to to take immediate action. 

We will meet with the oncologist Thursday to discuss our game plan. From what I have been told so far via telephone , they would like to do another biopsy (Which will be tricky due tot he tumors location in the middle of his brain). Half of the tumor is solid and the other half is liquid…they think they may have only gotten a portion of the tumor as a biopsy sample when they took it back in December of 2011. After biopsy is completed they will decide if he will have chemo or radiation.

This is so frustrating. We were so ready for him to just get back to school and be a normal kid again. Its not fair….I've cried more than I can imagine in the past 24 hours, gotten zero sleep, and I am on pins and needles waiting until Thursday so that we can make a decision. It is ripping me apart that I can't help my little boy and just wave a magic wand and make this all go away. Why him? Why us? 

We will keep everyone posted…-Mommy Nester

Update (08.14.2014)- We met with the oncologists (Dr. Mulawi & Dr. Chris) to discuss our options. The option they seem to be leaning towards at this time is surgery...We won't have a definitive answer until they have a round table discussion with the other staff on Wednesday looks like we are waiting again…

Update (08.25.2014)- Verdict is in. Bennett will be having Brain Surgery; a partial resection of the cysts and tumor on Thursday, September 4, 2014. 

August 10, 2011 (Party at Chuck-E-Cheese)

In honor of Bennett finishing with his 15 month round of chemo, we thought it would be fun to get our close family together and have a party at Chuck-E-Cheese! He  has never gotten to go there b/c of all of the kids and germs….but since we are done with treatment for a while, we decided to let him splurge and have a fun time! Here are some pics from the celebration! ;)

Friday, August 8, 2014

August 8, 2014

For those of you who have been following along with Bennett's journey, you all know that today will end our 15 month chemotherapy cycle for Bennett. To describe it all in one post would take hours. This entire experience has had it impact on us all all of those around us who love and know us, and even possibly some of those who don't and heard our story from another source. Despite the degrees of separation, this diagnosis, this 4 year old with brain cancer has given us all hope. I have been exhausted, mentally and physically, spiritually and financially, but somehow we have come out of this with a happy little boy with a full head of hair and a tumor that will hopefully remain stable for the time being. My own child at 4 years old is teaching his mother how to love, be patient and kind, to see the positive light of things...examples (Getting his port accessed is a GAME to him...Getting Bandaids is FUN...laying sick in the hospital bed for days is AWESOME since they bring you food in bed and you get to watch Disney's Cars on TV all day long....wearing a mask makes him a Super hero so that is SUPER cool...this list could go on and on...) He has taught me to see that life is worth living, even at 4 years old he is a stronger than I will ever be. I have to be strong for him...even when my heart and my body want to quit. One look at that face, one whispered "I love you Mommy" makes all of those fears that I will fail and not be able to protect him from this cancer go away. God has given him to us for a reason. 

We arrived at TCH Main today with mixed feelings. This would be the LAST visit there for at least 3 months. For the next 3 months, after his MRI Monday, we can just relax and try to be a kid again. Of course we have a few appointments here and there, but our prayers at the end of all of this are that the tumor will not show growth. Not on Monday, or 3 months from Monday. As always, Bennett was amazing. He walked in and greeted everyone like he always does. ;) His ANC's were 1200. We had a brief meeting with Dr. Rednam his oncologist, after his MRI Monday he will call with the results. On pins and Needles until then. Vistors today were Mommy; Daddy; Payge (Who brought him a new buddy-a Giraffe); Gammy & Papa. We got the chemo, and then went straight to the zoo to go see our favorite Giraffe Miles! It was awesome, all of the giraffes were in the barn, and when Bennett went up to the platform to feed the only one that came over to feed was Miles. I SWEAR that Giraffe knows him! lol.

I will post another update Monday on MRI Results. Everyone please keep your fingers crossed. I know that we will eventually begin chemo again, but I just hope it is far enough off for him to be a kid again, even for a few months. Lots of Love- Mommy Nester

                                                                             Dr. "Chris"

                                                                            Dr. "Red"

August 1, 2014

This will be the LAST chemo therapy infusion we will receive at TCH main campus....Kind of sad about it in a weird way....this has been our home away from home for almost 2 years now. All of the nurses know us so well. It will be odd not getting to go to "letters" every day and push number 1 and go to number 4, purple door on the left. A huge thank you to those nurses who have been there for us the past 15 months and have made my child feel so loved and special during this difficult time. They will never realize how much that meant to us. Moving on....this session was visited by Aunt Shelf, Uncle David, Maddie, Sam & Ms. Barbara! ;) Bennett was so excited to see them all. His counts were 1250, so he was able to get chemo. Since he did so well, Mommy and Aunt Shelf too the kids to see a movie Saturday morning. Only 1 more week until he's a KID again. So nervous. ;) -Mommy Nester