End of Induction Treatment Phase

It’s been an eventful week for us. Last Monday 5/16 was Elliot’s last day of steroids (for a while). It took a few days for the effects to wear off, but he finally started smiling and laughing towards the end of last week. It was and is so wonderful to see! It had been several weeks since we had seen any amount of happiness come from him. He still is having trouble moving. He can’t bear weight, walk, crawl, or roll over. He can sit, but if he falls over, he’s stuck. That is most likely still a side effect from the steroids, and he should regain his strength soon. His bald spots were getting worse, so we shaved off what we could of his hair this past Friday.

We got the results of Elliot’s bone marrow biopsy back on Monday 5/23. They run a precise lab test that tells the Minimal Residual Disease (MRD) remaining in his body (basically, the amount of leukemia cells remaining that are not detectable by normal blood work or under the microscope). Elliot has been classified as standard (or average) risk so far in the first phase of treatment (called the "induction" phase). Based on his blood counts, the doctors were pretty confident that his MRD would be good and he would continue standard risk. However, that was not the case. In order to stay standard risk, his MRD had to be below .01 percent and his was at .23 percent (yes, that is twenty-three times higher than it should have been). The strange thing was that at day 8 of his treatment, his MRD was below .01 percent. So sometime between day 8 and day 29, it multiplied. It appears that his body has not been as receptive the chemo as they would have liked. The doctors are puzzled about this, but thankfully our God is not! Because of his high MRD, he got bumped to the high risk category and his chemotherapy will intensify for the next phase (called the "consolidation", which lasts 57 days). We checked back into the hospital on Tuesday and spent one night for some more intense chemo, but came home today (Wednesday). We now begin chemo by mouth and by shot at home, and he will have chemo injected into his spinal fluid the next three weeks in a row.

The MRD lab test is a relatively new way of guiding leukemia treatment. The current thinking is that a higher number means higher likelihood of relapse. The goal is to intensify his treatment now in order to prevent relapse in the future.

We know that we have a lot of prayer warriors out there and we apreciate it more than you know! Here are some specific ways you can pray for us.

1. Full and complete healing for Elliot!!!


2. That his body would be responsive to higher intensity chemo, that it would kill all the leukemia cells in his body, and that he would have minimal short-term or long-term side effects from it.


3. That his mobility would return.
   


4. Peace and strength for us. As you can imagine, this whole thing is a roller coaster ride. This week's news was particulary discouraging for us.
   
   
   “Bless the Lord, O my soul, and all that is within me, bless his holy name! Bless the Lord, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy” Psalm 103: 1-4
   

Big Day Tomorrow

We are near the end of the first phase of treatment (induction), and tomorrow is a big day. We are going into the office for a bone marrow biopsy, a lumbar puncture, and a dose of chemo in Elliot's spinal fluid. The results from tomorrow's tests will help determine the course of treatment for the next phase called "consolidation". We probably won't get the results for a week. We are praying that everything looks good and that the leukemia is in remission (no detectable leukemia cells).

Elliot has been miserable for the past week. He doesn't walk, stand or play. He is wiped out--wanting to be held (by Mommy if she is anywhere in sight!) and taking frequent naps. He is hungry but tends to eat only a bite or two and then asks for something different (like, what he has doesn't taste good to him). He does like riding in the stroller and going for walks so we do that frequently. His hair is also starting to fall out. Today is the last day of his steroid therapy (for now), and we are hoping this will help him feel a little better.

For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4: 17-18

The above picture is Elliot helping give his chemo during the last hospitalization (on 5/9). He is bloated from the steriods.

UPDATE: His procedures went well. The hardest part was not letting him eat or drink anything before (they didn't start the procedures until 10:00). They had trouble getting blood for his labs when we got there, so eventually had to get them from his port after it was accessed. Thankfully, he was put to sleep for the lumbar puncture and the bone marrow biopsy because the bone marrow biopsy looks painful. We should get the results next week. Thanks for the prayers.

Another Hospitalization

We were told that over the course of Elliot's treatment we would have unplanned hospital admissions, but we didn't think it would be this soon. This past Friday, Elliot spiked a fever of 100.5 under his arm along with a bad cough. We had been thoroughly drilled by the hospital staff to call the office it was ever over 99.5 because his immunity is so low he may not be able to fight an infection on his own. We called the office, and they told us we needed to be admitted to the hospital. Fortunately we could go right up to the Pediatric Hem/Onc floor and skip the ER. They drew some blood cultures, started him on some IV antibiotics, and took a chest x-ray (which was clear of pneumonia). Elliot felt miserable all weekend. Although it was hard to see him so pathetic, it was actually easier to have him in the hospital than last time. He laid around a lot and did not even want to get out of the bed. We are grateful that the cultures didn't grow out any organisms (which leads them to think it was a viral infection), and his lab values continued to improve each day over the weekend (platletes, hemaglobin, and his AGC are all up). He was scheduled to have another dose of chemo tomorrow, but instead they gave it this morning in the hospital and discharged him afterwards. He was worn out and took a 5 hour nap today!

Monday

This morning when Melissa got Elliot up from his nap, he had a bloody nose with blood all over his face and on his sheets. Then when she went to wipe him while changing his diaper she was getting blood on the wipes (although none was visible in his stool). We called the office and they told us to come on in. His Hgb was stable (12.1). Some of his clotting labs were a little off, making him susceptible to bleeding, but nothing was off enough to warrant a transfusion yet. Since we came in they gave him his dose of chemo today. This was the first time they have accessed his port since being discharged last week. We put some numbing cream on the port before to minimize the stick of the needle accessing it. Needless to say, Elliot didn't like having it accessed, but they were able to give the chemo and draw labs in about a minute and then de-access the port. His AGC (immunity count) was 136 today. That is the lowest it's been yet but that is to be expected.

They told us that the steroids we are giving him would increase his appetite significantly and make him irritable. Well, both are true, and our boy has been blossoming (see the picture). This morning Elliot woke up around 4 am saying "I hung'y. I hung'y". He has been eating often throughout the day, but nothing really seems to make him happy. He has also been feeling miserable the past few days. Occasionally we can get him to break a smile (like for this picture), but not often.