Ryan's Follow Up Appointments with GI & Neurologist

Ryan had two doctors appointments today.

We first went to visit with the GI Specialists to follow up on his diet and weight gain. We met with the Physician's Assistant and the Dietitian. The appointment went well. Ryan weighed 20 pounds 14 ounces and is 30.25 inches long at 21 months. (Wow, he's 21 months today.) They were pleased to see that he was so alert and to hear that he has been much more communicative with smiles and sounds. They recommended we increase his tube feeds to 40 ml/hour and continue offering juice and some fruits by mouth. We will go back in for another follow up visit in 3 months.

Our next appointment was with our favorite pediatrics neurologist. The appointment was at 10 am and I had marked off the day since we normally have a 4-6 hour wait before even getting into the exam room. I was pleasantly surprised when I arrived with my DVD player & headset, books & knitting that there were only 2 people ahead of us. The most surprising part was that the doctor wasn't even an hour behind, according to the appointment times. Whewhoo!

We had a nice conversation with Dr. Seals. I reported the concerns, specifically Ryan's increase from 1-2 myoclonic seizures each day to 20-30 sporadic myoclonic seizures each day. We also talked about the fact that he is really not using his right arm much and he's keep it stiff and pronated behind him. We also talked about the way he is flexing his little legs after therapy and not allowing them to relax again. I also reported about our visit to Dr. James Gibson, the metabolic geneticist that we saw earlier this month and gave him a list of the tests that Dr. Gibson ordered. He knows Dr. Gibson and was very complimentary of him.

After asking questions and taking notes, Dr. Seals has ordered another brief EEG on Ryan for next week with blood levels to be done the same day. I asked the reason we're doing another brief EEG as we had previously discussed at some point doing a 24 hour video-monitored EEG. Dr. Seals explained that for a child Ryan's age, he will get a lot of "noise" on the EEG that is caused by movement. He also explained that he doesn't really need an event to happen during the EEG. What he is most interested in seeing is the pattern of electrical activity, and comparing the pattern to the previous EEG's.

We are going to hold his medicines at the same level until the evening after his EEG. Then we will increase his Lamictal to 2 tablets (50 mg) twice per day. We will go back in for a follow up appointment with Dr. Seals in 3 weeks. That will give him time to have EEG results and also time for the increased medicine dosage to have an effect.

Since I had planned on being at the dr's all day, I had farmed out all the children. Most of the children went to our friend, Mary's house. (We all love that family! And, I think my children would move in with them permanently, if allowed.) Thanks, Mary! Johnathon was able to have a special date with Nana. They had lunch at his favorite restaurant followed by a round of miniature golf followed by a movie. He was SO happy this evening! Thanks Nana for making his day so special! I think it was just what he needed!

The nice part for me was that I was home much earlier than I expected. I think it was just a little after noon. The house was so quiet. Ryan and I snuggled up in my bed and just spent the afternoon resting. He is a very empathetic child. So unfortunately when I'm not feeling very well, he seems to pick up on it and gets fussy. But, every time it happens, once I pick him up and just lay him right next to me, he's fine. I believe he just needs to feel me to know that I'm okay. It really is rather nice in a way. How many 21 month old boys have you known that make such good snugglers?

I went in for my shot this morning around noon. (Did you know it doesn't hurt too bad to get a shot in your stomach?)* I was pretty red when I got to the office, but I still didn't have a fever. Since I wasn't running a fever, we're going to stay on schedule for chemo #4 followed by a biopsy. So, once again, prayers were answered. Thank you all!

*Whenever I think of shots in the stomach, I recall the night I was giving Joyce a shot in her stomach. She was pregnant with Jason at the time. I was like 13 or 14 years old and really nervous about the needle hitting the baby and hurting him. Joyce assured me over and over again that it wouldn't. So, I did it. I stuck the needle in and just as I did, Jason kicked his mom so hard that I can still see his little foot print on her belly right by the needle. It was horrific! I could never do it again.

I made it through the night without a fever. My stomach felt awful all night. Finally I gave in around 1.30 and took an anti-nausea medicine. Then 30 minutes later, I started vomiting. Seriously, aren't anti-nausea meds supposed to prevent vomiting, not cause it? Does that seem unreasonable to you?

I finally was able to rest starting around 4.30 and woke up around 7.30 to Deborah yelling, "Mommy, where are you?" She was panicked. It was very abnormal behavior for Deborah. Usually she just comes to my door each morning and knocks. She likes to come into my bathroom to go potty each morning. After I realized that her panicked little voice was calling out for me from farther and farther away, I went to the balcony and called back to her. She cried out to me, "Mommy, I don't want you to leave!" She kept repeating herself over and over again. I told her that I was still in bed and I wasn't leaving. I finally convinced her to come upstairs. So, she finally came up and snuggled into bed with me. I explained that I have to go to the doctors today, but that I won't be gone very long. I also told her about Nana's plans to do some fun things with her. But, what she seemed to need the most was just to snuggle with me. About 30 minutes later, she was done and off and running happily around the house.

When she got up, I went into the bathroom and noticed, dang it! I'm dark red all over. I don't feel yucky like I did after the last round of chemo. Mom says I'm running a fever, but since I've been drinking a cold shake, I can't take my temperature right now. Ugh. So, is it really a reaction to the chemo, or could it be a reaction to the so-effective anti-nausea meds?

I go back to the dr's office this morning to get my shot. It'll be interesting to see what he has to say about this. Blasted it! I thought we were going to get through this chemo without a weird reaction. I'll keep you all posted.

Chemo #3

Chemo #3 was this morning. I went to the treatment center, and my Oncologist insisted on seeing my blood labs before letting them start my chemo. Thankfully, my white blood cell count was just above the bare minimum. Just enough to go ahead with treatments today. (Tomorrow I have to go in for a shot of Neulasta, to rebuild my white blood cells, which seem to always take a beating from this chemo regiment.)

They were able to easily access the medi-port, and although it doesn't feel good, it's SO much better than getting an IV, and especially better than 3-4 sticks for an IV.

The drugs went in without any reactions. They doubled my steroid dosage today in hopes of preventing a repeat of last chemo's reaction. You might remember that I ran a high fever, turned dark red, and felt pretty miserable after chemo #2. They were unable to find any trace of infection and so it was either viral or random or a hypersensitive drug reaction.

I'm praying that I don't have a hypersensitive drug reaction this time as it means we have to re-evaluate what we're doing. I know this treatment will work. We just need to stick with it. I need the doctor to have enough faith to stick with it. Today when he came to see me, I thought, "Oh, no. He's changed his mind." But, he said he wanted to go ahead and hope that it doesn't happen. How about if pray instead of just hoping it will happen? I think the combination will be much more powerful.

True to the past experiences, almost exactly 6 hours after chemo, the headache hit and about an hour ago the nausea hit. I'm trying to make it through the night without taking any anti-nausea meds cause I just don't want to risk any kind of reaction. The simpler, the better, right? I don't know if I'll make it.

I'm so thankful for the opportunity to be refined. You know, I need a lot of refining! I'm thankful that He cares enough about me, and that He sees enough worth in me to teach and mold me. I can't imagine a better teacher than the Master, Himself.

Thanks for all your prayers! I truly feel the lifting power of the prayers. I really don't know how my family and I would have done this without so many amazing people in our lives. The prayers, the food, the words of encouragement, the food, the blessings, the help with kids, the help with the house. Sometimes, I think, "Oh, this cancer thing isn't so bad." Then I realize that it is only because I am not bearing the burden alone. I could not bear this burden alone, especially not with the others I carry. But, with all of you, and with the Savior's unyielding strength, I can do ALL things.

I can't wait till all this settles so that I can see the needs and be the one to step up to help. If I serve every day of my life, I'm not sure that I will ever be able to repay the incredible debt I have to all of you. And, I know that I will never be able to repay the debt I have to my Savior.