Alex was admitted to Primary Children's Medical Center on Wednesday, 10/14. He had surgery to put a central line with a port into his chest. This is the line used to deliver his chemo meds into his body. The line went in without any problems. He also had a lumbar puncture done. The spinal fluid was clear. (Good sign) He was also given an injection of chemo into the spine at that point. Surgery took about 1 hour.
He was then moved to the oncology unit which was all decorated for Halloween. I keep forgetting that we are in a Children's Hospital. Apparently Lymphoblastic Lymphoma is mainly a pediatric condition although adults do get it. The treatment protocol for adults is still the pediatric protocol.
Alex received two different chemo meds via the port and then one chemo med by pill. He was also given other meds to help with side effects such as nausea. So far he is feeling fine. No nausea. We are told that he will start to feel tired and more nauseated by the end of week 2 as the medicines start to accumulate in his body. He will notice hair loss around week 3.
We are expected to leave the hospital on Saturday after he receives one more shot of chemo medication. This is good news since he wasn't expected to leave hospital until Monday. From then on he is scheduled to do chemo on an outpatient basis. Treatment for Lymphoblastic Lymphoma is 24 months. For the next month, we will return to the hospital to receive his meds every Thursday. He will also have his blood counts taken and receive transfusions as needed.
The doctor and nurses have been wonderful. Alex's oncologist, Dr, Phillip Barnette is very knowledgeable and is very personable. He spends as much time with us as we need. This whole "team" concept that the doctors in HK said we would have in the US is amazing. Today we have met with the oncologist, nurse practitioner, social worker, dietician, out-patient chemo nurse, and Alex's two private nurses. Everyone had a stack of hand outs for us and were willing to answer any and all questions. There is so much to learn about lab reports, CBCs, ANCs, etc. So much to learn about the different meds and the side effects to look for.
I am awed by all the people who have chosen to work as health care professionals. They are a special breed just like teachers. They are dedicated and so vital to society.
Alex is being such a brave soul and although it's only been 1 day, he is doing great. He misses his friends dearly.
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Lily -
ReplyDeleteVery relieved to hear Alex's new 'team' is so wonderful. I know you will continue to receive the same level of excellent care, comfort and compassion.
And to learn he will be out this weekend and getting treatment on an outpatient basis is amazing!
God Bless...
Susan
Have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer." — R.M. Rilke
ReplyDeleteHey Alex--Eli and I just walked your DVD to the postbox. Hopefully it will get there without too much snail mail delay. It's nothing great...my artistic ability is limited to what the iDVD template will let me do:) We are gearing up to host the HKIS meet today. I can shoot you an email with the results later tonight. It should be a good race with about 205 entries! We are going to run the Varsity/JV format with the guys and gals running at the same time. I'm sure that Maddie and your pack will all run really well that way! She needs the competition! I went out yesterday and got some green and purple silk ribbon to tie around our wrists to show you our love and support and solidarity...and I've got a metallic pen to write "Another race to win...FTW! (For the Win) Although I think I'll let Lauren write that on the ribbon...she's got much better handwriting than I do!
Glad to hear that all went well the other day with the port/cath surgery. We all knew that you were bionic...now you have the hardware to prove it! Hang in there through this week and know that we are all thinking of you and praying for you here. Caleb and Eli are bummed not to see you at practice and the meets, but they pray for you every night and send you a big hi. (Eli also wants to know when he can play with the stick again!)
Talk to you soon,
Mrs. Ferrin
Alex, Lily and Gary,
ReplyDeleteThe "team" concept is great it is what I had and it makes you feel like you literally have a team pushing you forward. Alex, I know from first had experience that Chemo is hard and it looks like you will have it much longer then I did. My treatment was only for 6 months. The port is the way to go to receive the drugs - the pills were hard for me, I would hold them in my hand and tell myself if I take these I will feel like "CRAP" - but I also then told myself I want to do what I need to do to get better so down they went. I was okay for the first month and then the tiredness creeped in with each passing month. But, don't get discouraged it is just a longer race to finish. My prayers are with you and your mom and dad. You can do this, you are stronger then I was and am. Love, Heidi Gailey
You know, I think I may be a little old for this blogging thing. I just wrote a comment and when I went to post it I couldn't. So here we go again....
ReplyDeleteI am thrilled to hear that everything is now under way and that Alex is doing well. It sounds as if he is in very good hands there--though I didn't expect anything less. I am thrilled to hear that he will be going home so soon and that he will be able to do his treatments as an outpatient. He must be very happy about that. I know you all have a long road ahead, but as you aptly titled this blog page, it is just another race to win and Alex will do just that. My love and prayers are with Alex, you, Gary and the entire Lew and Lee gang. Lily, as I told you when we spoke last week, I am ready to come out for a few days, you just say the word and I'll be there. Hugs to all. Love, M
Hi Alex, Auntie Lily, and Uncle Gary,
ReplyDeleteThanks for the update. We've been anxious to find out how you've been doing. You're in our thoughts and prayers. love, Eric and Marianne
Alex,
ReplyDeleteI'm a friend of your parents. I met you at Chris's farewell. I'm so sorry that you have to go through this trial. I understand everything you are going through because my niece Tiffany is going through the same thing. She is at Primary Childrens as well and knows your dr. Tiff is 20 yrs old and lives in Lindon, ut. not too far from your grandma's. I sent your dad her blog. You two will most likely see each other at the hosp. I told her to watch for you. You are on my families prayer list now! We will include you in our family's fasting and prayers that we all do for Tiff. Stay strong and know that you have a lot of people supporting you every day! You will beat this cause you are a Lew! You come from an a very strong family so I know you can kick cancer's butt!
Please keep in touch,
love,
Marilyn Hess Lindon ut