I’m terribly sorry for the delay in updating this. Our internet has been off for a couple of weeks. We are flooded still and they can’t get the wires fixed until it dries. So library here we stay…
Caleb had a very hard January as he had to undergo round 4 of his antibody and iterlueken. This makes him swell and lots of pain, have low BPs and blood transfusions. We were all glad to see him through that. In Feb. he underwent round 5, which was his last hospital round. He did great. We were expecting lots of issues, but he breezed through it and never even ran a fever. The last day we threw a huge party for him and Publix donated over $300.00 worth of food. We celebrated like we had never before.
He still has lots of Drs. appts and scans to undergo, but we can stay home. Caleb is lost and having behavioral issues as now he has to share. He also is not out of the clear nor will he ever be. Unlike other types of Cancer, neuroblastoma never goes into remission. It hides in your body and becomes inactive. They call it NED no evidence of disease. There is an 80% chance of relapse because of this. With Neuroblastoma it’s more of a when he relapses instead of a if.
We continue to have hope and faith in God that he can have a long and happy life, but we will never let our guards down. So, as of now he’s doing real well, even had his first haircut since Aug 2008 on Valentine’s Day. We thank each and every one of you for all the cards and letters and gifts. You have been so kind to our family and we pray for each one of you every night.
Cheyenne (Caleb’s mom)
Caleb S.
Diagnosis: Neuroblastoma
Caleb has had a few rough months. His radiation went real well with no side effects at all. We redid his scans back in August and he was still clear (NO CANCER). They did find out that 4 of his vertebreas were cold which means that they will never again get nutrients to them and they will eventually crush. Which in turn could make him paralyzed. They are aware of this and in 5 years will start to watch for this as then they will have to go in and put a rod in his back. He will then have to have it replaced every 7-10 years.
Caleb started his last phase in October and it’s the worst one.There are 4 parts to each round and there are 6 month long rounds. He gets admitted for 4-8 days each month depending on the month. There are 4 pages of side effects that goes along with this phase. So far he has had fever, diarrhea, vomiting, black tongue, lung spasms, high blood pressure, low blood pressure, blood infections, muscle pain, rotten teeth (his good teeth), weight loss, and lots of back pain. He will start his 3rd month on December 13th. Half-way mark. We are so excited. That’s all we have to report for now, but please keep checking back on us.
Merry Christmas to you all and Thank You for your continued support.
Cheyenne (Caleb’s mom)
Caleb S.
Diagnosis: Neuroblastoma
Hello MACS,
Caleb has had a lot happening these past few months. Caleb had his first bone marrow transplant on April 14, 2009 and his second bone marrow transplant on June 17, 2009. He had some blood infections and contracted a gut infection called VRE. He had multiple blood and platelet transfusions. Overall he did real well.
On July 20, 2009 he started his first radiation treatment out of 13. He did real well and I don’t think it phased him at all. On July 17, 2009 Caleb’s right foot became swollen, red, and itchy. He was admitted for IV antibiotics. We were released a week later. Within 6 hours of of our release Caleb’s face got so swollen we had to return. They put him on more antibiotics and decided to go into his sinus cavity and clean it out. That went fine and he showed no sign of fungus so a couple of days later they let us go home. His swelling went down and we thought our life was getting back to normal. We even decided to go to Disney for his wish through Dreams Come True. We were to leave on Saturday August 22, 2009. Then Caleb’s face started to swell again on August 18, 2009. As soon as we walked into the Drs. office they said we weren’t going and then they admitted him for IV antibiotics. They want to know why he keeps swelling. They did an MRI yesterday to see what may show up because the catscan shows nothing. He feels fine and is eating us out of house and home. We signed his next phase consent forms yesterday and as soon as they find out why he is swelling he will start. This is an Antibody Study and it has 4 pages of side effects we have to deal with. We really need your prayers as this is the hardest phase he has to go through. We also will be having all of his scans redone by the end of September.
Cheyenne (Caleb’s mom)
