Hello everyone again!
It has been a while since I have updated about our Benjamin. He's been sick and we celebrated his first birthday!!! I'll try to be brief.
As you may remember, in early December Benjamin had follow-up testing to see how his LCH is improving. "Significantly improved" was the description we were given by the doctors!
Since then, the bone lesion on his forehead keeps flaring just before each chemotherapy treatment, which obviously has been concerning. Our Oncologist has been saying that because of this "annoyance", we will probably have to return to some more aggressive treatment, which was going to be today. However, we have had a little hindrance in this plan due to the fact that Benjamin was exposed to chicken pox last week from his big sister Maddie.
In addition to the chicken pox exposure, he got a fever on Tuesday of last week (which happened to be his birthday! Poor guy!). This has caused us multiple trips to the hospital in the last week and even a two-night stay. Because he has a central line (permanent IV port in his chest), they have to rule out any bacterial infections in his body. After many blood tests, cultures, and antibiotics, nothing bacterial was ever found and they figure he just had a virus. But with all of that too, his white blood cell counts became significantly low. He was finally able to be discharged from Primary Children's on Saturday but he had to be on IV antibiotics at home. Yesterday, we received word that his blood counts are improved enough to discontinue the antibiotics- YEAH! It was a little annoying having his port accessed 24/7 (It's like having an IV in your hand or arm if you've ever had one, only this of course is in his chest.).
Today was chemotherapy day! They were able to give the Vinblastine (the chemotherapy drug), thankfully. We were concerned that they may not because of his low white blood cell count. But our doctor did want to wait on the Prednisone because of his chicken pox possiblilty! Typically he gets 5 days of Prednisone after the Vinblastine. He is just having us wait a week on that- which means we are post-poning the irritability as well for Benjamin! This really is nice actually!
Now the plan is to wait three MORE weeks and THEN Dr. Fluchel, the Oncologist, said we would do an x-ray of his skull to check the lesion on his forehead. If it does show signs of flaring on the x-ray, THEN we will probably do a three week induction (chemo weekly and prednisone daily). The rest of the follow-up testing should occur around the beginning of March. This type of pattern will continue through October when Dr. Fluchel expects that all of the LCH will be under control.
Benjamin appears healthy and well! He's almost walking and is such a little delight! We finally had his birthday party last night with our family (our fourth attempt and nine days late due to his illness.)! His big sister Maddie planned the party with games, prizes, decorations, and "mouse" cupcakes! It was so much fun just celebrating this little guy's life! We feel so fortunate and blessed that he has been part of our family this past year! He has been such a blessing to our family! This whole experience has brought new meaning to the word "celebrate" for us!
Lastly, I just want to share with you all some thoughts I have had. While Benjamin stayed in the hospital, he was on the ICS unit (aka: "the cancer floor"). Each young patient there was missing his/her hair, which made us feel especially thankful (he just had his third real haircut!). We were surrounded by families going through much harder things than we have had to deal with so far. Because of Benjamin's exposure to chicken pox, he was in an isolation room. As we were leaving the hospital, just the two of us, I realized it was the first time he had been out of that room in 48 hours. I was so excited that we were going home! I then realized that he was feeling it too! His little bright eyes were fixed on all that was going on around us as we made our way to the elevator of the fourth floor. We entered the elevator alone and then were stopped on the third floor. A man and woman entered the elevator with a child-size toy wagon with the inscription "Ivy's Cancer Wagon" written on the back. Assuming that "Ivy" was their daughter and that they have spent too much time in the hospital, and that they have enjoyed their trips going home as well, I enthusiastically stated to them that we were happy because we were going home! The man replied, "Oh, that's good. We are going to be here until the end of February." Suddenly my excitement left me! I asked where they were from and when they replied by saying, "Vernal", (about a three hour drive from Salt Lake) my heart sank, imagining the trial it must be to live such a great distance from the hospital. What a burden these people were carrying! After wishing them well, Benjamin and I exited the hospital. As I drove home, I could only think about them, the other children I saw on that cancer floor, the children in the Oncology clinic that we have met, and even little Azalea Butler, whose mother we met in the surgery waiting room a few months ago. (Azalea's story is for another day. But to quickly summarize, she is a seven-year-old with a rare heart disorder who was having her sixth brain surgery; whose mom is single with four other children, only an apartment to live in, relying only on public transportation, and no family or friends nearby to help, not to mention having financial struggles too.)
With these thoughts, I recalled the moments in the scriptures when the Savior himself loved those who were less fortunate, sick, and afflicted in many ways. He especially loved the little children. I think my favorite part in all of the scriptures is the time when He appeared to the Nephites and blessed the little children.
3 Nephi 17:21-24 says, ". . . and he took their little children, one by one, and bblessed them, and prayed unto the Father for them. And when he had done this he wept again;
And he spake unto the multitude, and said unto them: Behold your little ones. And as they looked to behold they cast their eyes towards heaven, and they saw the heavens open, and they saw angels descending out of heaven as it were in the midst of fire; and they came down and aencircled those little ones about, and they were encircled about with fire; and the angels did minister unto them."
I hope and pray that angels do minister to these children daily like I have mentioned above. I know that Jesus Christ would take each of these children on his lap and hug them and love them if he were physically here today! He would weep for their pains and sorrows and then bless them and heal them too! I know that He would! He did it in times of old and He will do it again when He comes again.
I hope you all have a good night. I thank you for bearing with my need to share! And thank you so much for your concern for Benjamin!
