Today's Lab Results

Jeremy's ANC dropped to 200. He will not be able to do chemo tomorrow. We will give him Neupogen shots for three days and check his blood count on Thursday. Hopefully he will be able to do chemo on Friday.

Our ward Primary made a CD of the children singing and talking to Jeremy. He has already watched it three times. He misses the association of his friends.

Jeremy is having separation anxiety when I leave the house. We are working through it. Mike stayed with him while I went to church yesterday, to try to help him adjust to being away from me. Jeremy has a routine that helps. He likes to set a timer for the amount of time that I will be gone. He has memorized my cell number and knows that he can call and talk to me. He also gives several hugs and a wave from the porch as he watches me leave. We are hoping that by working through this now, it will help him be ready for school in the fall. I am also planning on volunteering in his classroom. It is nice that he sleeps in, so that I can get my daily walk in before he wakes up. His anxiety will probably lessen when chemo is over. We are still hoping and praying that chemo will be done by the end of July.

Out Patient Chemo Today

We just returned home from chemo. Jeremy fell asleep on the way home and is now sleeping on the couch. His blood counts are good. His ANC is very high. For now, we can stop giving him the Neupogen shots. Jeremy will have his blood drawn on Monday and hopefully his counts will stay up for chemo on Tuesday. I was talking with the doctor today about how tired Jeremy is when his ANC is low. He said that the tiredness is from the red blood cell count (hematocrit) being low. Jeremy's was 26, not low enough for a blood transfusion, but low enough that he will feel tired and irritable. Hopefully he will start to have more energy now that his counts are up.

A few days ago we noticed a link missing from Jeremy's  count down chain. We asked him about it and he said that he took it off. He thought that if he took one of the links off, that he would only have to do two chemos instead of three. We had to explain to him that it doesn't work that way. 

There is a little water feature outside of Primary's that we walk by each time we go to the hospital. Jeremy likes to toss a penny in the water and make a wish. I always ask him what his wish is. "I wish that I will grow big", "I wish that I will make a new friend". Today's wish was, "I wish that I will get better someday". I talked to him about how "someday" is very soon. He should be done with chemo by the end of July (a month is such a long time for a child!). He will still have scans and surgery to remove the port, but the hardest part will be over. 

Disappointed!

We are so disappointed! Jeremy was suppose to attend Camp Hobe today. It is a camp sponsored by Primary Children's Hospital for children who have cancer and for their siblings. It is highly supervised and provides medical care with physicians and nurses. They are also very careful  for those who are immune suppressed, the kids attending only have to have a ANC of 500. There are many medical forms and doctor release forms to fill out. They even do a medical screening of each camper in the parking area outside of camp, to identify anyone who may be ill, and reduce exposing others to their illness. If someone gets sick while at camp, they are sent home. Ireland attended the camp last week and had so much fun. It was a great experience for her. She developed a friendship with a girl her age who has cancer and is in remission. Jeremy and I were planning on attending the day camp today and on Tuesday. His numbers were great on Thursday and has been on the Neupogen shots for a week. We thought for sure he would be able to attend. We were so surprised when his ANC dropped to 300 on Sunday. He has never dropped low while on the Neupogen shots. He had his blood drawn again today. We were hoping that maybe his ANC would come up to 500, but instead it dropped to 200. We are continuing the Neupogen shots and he will have his blood drawn again at clinic on Thursday when he has the Vincristine chemo (this chemo is not count dependent). Hopefully Jeremy will be able to go to camp next year. We are so disappointed, but there is one positive possibility. His VAC chemo hospital stay is next Tuesday and his ANC needs to be 750. He has a whole week to get his ANC up so that the VAC chemo is not delayed. 

One More Chemo Down, Three To Go!

Jeremy had out patient chemo yesterday. Jeremy was so excited to take a link off of his count down chain that he ran into the house and took a link off before I even got inside! The Vincristine chemo does not make him sick, which is nice. It has other side effects that we are dealing with. It affects the nerves. Jeremy has been doing physical therapy so that he will not trip when he runs or trip walking down stairs. We have noticed an improvement and he has not tripped for a few weeks. The physical therapist when examining him was pleased with the significant increase of strength and range of motion in his legs. The Vincristine has also affected the soft pallet in his throat. For a few days after he has had the Vincristine chemo, he will cough when he drinks and when he drinks from a straw, liquid will come out of his nose. We have to remind him to slow down and take little sips. His voice is also different and sounds nasally because the soft pallet does not close properly. All of these side effects from the Vincristine should go away when chemo is completed. The physical therapy has helped. Also riding his bike is a great exercise for his legs and Jeremy loves riding his bike. He has out patient chemo again next Thursday. The Vincristine chemo is not count dependent, so he has those regardless of what his ANC is. So we do not have to worry about it being delayed. Only one out patient chemo and two hospital stay chemos left to do!

Cutting Off A Link From The Count Down Chain

Jeremy cutting off one of the links from his count down chain. Only four more chemos left to do!

 That big smile says it all! 

Friday, when the nurse was accessing Jeremy's port, he started crying and said that it hurt. The nurse realized that she had missed his port and pulled the needle back out. I understand that this can happen, but it was the first time that it had happened to Jeremy. I was not sure how he was going to react, and if he would let her try again. I liked how the nurse handled the situation. She apologized and said that she would be back in a minute. She returned with a nurse that Jeremy was familiar and comfortable with. He was hesitant and nervous, but he let the second nurse access his port, which she did successfully. I was so proud of him! That second attempt took a lot of courage! 

Chemo Today!

Jeremy's ANC has come up and we are heading to the hospital for chemo. We have been praying that it would not be delayed again. We are grateful for this tender mercy and blessing! Jeremy is in good spirits today. He has grasped the understanding that with each chemo, he is closer to being done. He is looking forward to coming home and taking a link off of the count down chain.

ANC 400

We thought that Jeremy would be able to do chemo today since his  ANC was 3,000 but within a few days it dropped to 400. He will have a blood draw on Thursday, and hopefully his ANC will be high enough to do chemo on Friday. Last night when I was tucking Jeremy into bed he asked me "Mom, I know that my birthday is August 13th and I will be six (years old), but when is that again?" I told him about two months. He said, "Oh, will I be done with chemo by then?" I replied, that he might not be, but if not it will be o.k. He closed his eyes real tight to hold back the tears. It breaks my heart. He wants so much to be done with chemo. We all want for him to be done. It is so hard when chemo is delayed, we just want to push through and finish.

We helped Jeremy make a "count down chain" to the end of chemo. The three green links are the overnight chemos and the two orange links are the outpatient chemos. He is looking forward to removing each link! This helped him visualize how close he is to the end. 

Last Friday evening, HopeKids sponsored an event at Hogle Zoo. The zoo was closed to the public so there were only HopeKids and their families. Megan, Ireland, Jeremy and I had a great time! Jeremy loves these events. We were so glad that his ANC was high enough for him to go. I am always so humbled at these events. There are children whose battle with a life-threatening illness is especially difficult and challenging. We are reminded of how truly blessed we have been.