Experiences From The Hospital

We can always tell when Jeremy is feeling better and ready to go home! We have to wait 24 hours after each fever, no fever for 24 hours, then we can go home. If he gets a fever during that 24 hour watch, then the clock starts again. While we were waiting out the 24 hour watch, Jeremy took tape and made a mustache, beard, and sideburns!

Jeremy likes me to read to him. His favorite book is "A Treasury of Curious George". We have spent many hours reading together.

The first night we had to give Jeremy a shot, I told Jeremy that I would take the shot (of saline) first and let him know how it felt. He was so upset by this and did not want me to get a shot (I thought that was so sweet!). He pointed to the nurse and then to Mike. The nurse said "you want your dad to give me a shot?" Jeremy shook his head yes! That sweet nurse let Mike give her a shot, which made Jeremy smile! She said that was a tiny needle and did not hurt much. Mike then gave Jeremy his shot, and he cried. Later that night he told me that Blackie (his stuffed dog) does not like shots, even if the needle is tiny. We are trying to find ways to help him and Child Life gave Jeremy a Chemo Duck. Chemo Duck has a port, dressing changes, and even a G-button. We have been role playing and letting Jeremy play "doctor" on Chemo Duck. He had so much fun that he gave Chemo Duck four shots and then gave Blackie five shots. We recorded it and he loves watching it over and over. A nurse let us know about Buzzy (a plastic bee). This has been helpful too. Buzzy's wings are a gel pack that is frozen and Buzzy also vibrates. The cold helps numb the spot for the shot and the vibration is a distraction. We purchased a Buzzy on line to use at home. 

We started giving Jeremy Neupogen shots to help increase his neutrophil count (ANC count). Neutrophils help the body fight infection. Jeremy's count last week was 100. Increasing the neutrophil count will help Jeremy's mouth sores heal and will also help his temperature go down. After four days of receiving this shot, his ANC was 11,000! His fever went away and his mouth sores have healed over the week. His number has dropped back to 1,200 this weekend. This number will constantly go up and down. He is doing well this weekend, eating, playing, and enjoying being home. His next big chemo day is Tuesday, and then the cycle will begin again.

Because of the flu season, the hospital has restricted visitors to age 15 and older. Jake, James, and Ireland, wave to Jeremy from the outside window and talk with him on Jake's cell phone. It is hard having our family separated. Megan came home from BYU for a visit, and this is the first weekend in a long time that our whole family has been together. We are looking forward to Thanksgiving weekend, if everything goes well we will be together for five days! This is a short little video of Jeremy waving to the kids from the window. (You may have to turn up the volume to be able to hear his soft, little voice.)

A Little Break

We got home last night around 6:00 pm. We had a nice little break at home. Jeremy played board games with the kids and was having so much fun, he did not want to go to bed, so we let the kids stay up late. We are headed back to Primary's for Jeremy's G-Tube surgery in a few minutes. Hopefully we will be back home on Thursday.

In the Hospital again...

After Lynnette's last post on Thursday, the home health nurse came by to draw blood.  Unfortunately, Jeremy was running a fever at that time, and when the test results came back, his ANC count had dropped to 100.  The two conditions required him to be admitted, and now here we are on Saturday night and they are still at Primary's.  The fever comes and goes, but until he can keep it away for more than 24 hours, he has to stay there.  Since he really can't eat anything right now, it's best he's there anyway to get fluids and nutrients through his port.  The surgery to get the 'G' tube is scheduled now for Wednesday, but if he stays through Monday, they will try to get him into the schedule early.  That would be great, as he can start getting more nutrients that way, and we can bring him home and hydrate him better here.  Staying hydrated should help keep his fevers down and with his throat so sore, he just doesn't want to eat anything.

Thank You!!

Dear All,

Expressing our gratitude to our family and friends on this blog does not feel adequate for the generosity, service, compassion, love, and support that we have received. My heart desires to express our appreciation and gratitude to each of you individually, and I plan on sending a thank you note to each of you. It may take some time to reach everyone...so until you receive a personal thank you, I want to take a moment to "publicly" express our appreciation.
We feel our family's burden has been lightened as you have been so willing to bear our burden through your love, listening ear, understanding, compassion, prayers, thoughtfulness, generosity, and kind acts of service. We feel blessed to have family and friends help us get through this difficult trial. Many of you have said "I feel helpless, I don't know what to do to help you". Just knowing that you care and are praying for us, strengthens us! We feel your support in person, on the phone, through texts, cards, and even through this blog. We also feel that we have learned much about serving others as we have been the recipient of service. We desire to follow your example and hope to be able to comfort and serve others as we have been so well cared for. We love and appreciate you! We hope you will feel the depth of our gratitude and sincerity.

Love,
The Russell Family

Fifth Week of Chemo

Jeremy painting with a "spin painting machine" while waiting for his chemo. I love how they gave him a syringe to dispense the paint!

Jeremy said that Child Life (she cares for the patient's emotional well being) is like the Tree House Children's Museum! She is the one who brings art and craft projects, games, play dough and beads for his courage necklace. He really looks forward to this part of chemo.

The hardest part about radiation is leaving the house at 6:30 am for our 7:15 am appointment each day. Jeremy has said, "Why do we have to go to the doctors's in the middle of the night?" He is still cooperative about going and likes wearing his pj's every day to his appointments. Jeremy is under anesthesia for radiation because he has to hold very still and also the mask that he has to wear can feel claustrophobic. This helps make the procedure easier for him. 

Afterwards, we went over to Primary's for chemo and his checkup. Jeremy's hematocrit blood test was low (red blood cell count) so we ended up staying the day at Primary's for a blood transfusion and did not get home until 5:00 pm. Cancer cells are fast growing cells. Chemo and radiation kill all fast growing cells, not just cancer cells. Blood cells are also fast growing. That is why the red blood cells, white blood cells, or platelets may be low. The doctor's watch the blood counts closely and intervene before the numbers drop too low.

The radiation and chemo (Vincristine) is causing Jeremy some jaw pain. He can not open his mouth very wide. This will continue to be painful and a problem with being able to chew. On Friday Jeremy will have a little surgery for a G-Tube (a tube placed in his stomach and will hook up to a machine for feeding). This is a relief for me, since his appetite has decreased and it is hard to get him to eat. I hope it will help with the weight loss as well.  

Everyone is friendly and nice but Jeremy is so shy he does not say a word to anyone. He will only give a shy little hand wave and a few nods when asked a question.  Dr. Holly Spraker is determined to win him over and has had some success getting Jeremy to smile, laugh, and even show her his courage necklace.

Jeremy enjoys listening to Christmas music in the car as we make our trip each day. He also looks for the Salt Lake Temple. We take Beck Street over to North Temple and we get really close to the temple each morning. Seeing the temple brings us a feeling of peace and comfort.

Hooray! No More Snoring!

After four weeks of chemo and one week of radiation Jeremy is sleeping quietly. His breathing is quiet and peaceful, no more snoring or sleep apnea. The tumor is shrinking and his progress is exceeding the doctor's expectation. We feel this is because of all the prayers being offered for Jeremy. Jeremy still has to finish all the chemo and radiation treatments to kill the cancer cells and stop them from spreading, but we feel very hopeful and are grateful for each sign of progress. Thank you for your prayers!

Life Continues

For a quick update:  We are finally home! Jeremy had a fever and we had to stay longer at the hospital. He is doing well at home, starting to eat a little (he has not ate anything for three days). After radiation this morning Jeremy said "Mom, can I have some banana bread?" So we made banana bread together when we got home. While it was baking Jeremy said "Mmmm, it smells so good". We are so glad it is Friday! We have a two day break from radiation and no chemo until Tuesday! Thanks for all your prayers, love, and support!

Long update: (mostly for journaling, venting, and for those who may be interested!) Jeremy had his first radiation treatment last Tuesday at 7:15 am. He was then admitted at Primary's for his VAC chemo treatment. This time it was a little harder for Jeremy. He was more nauseous and did get sick. We have to be especially careful with one of his chemo medicines, Cytoxan. For 48 hours after the Jeremy receives Cytoxan, we have to take him to the bathroom every two hours (day and night) so that it does not burn his bladder. He has an IV of fluids to help "flush" the chemo out of his system. If urine or vomit gets on his clothes, our clothes, or bedding we have to wash them in the washing machine on the hot cycle twice. We also wear gloves to protect our skin and we are careful to keep his skin clean. He also receives a medicine (mesna) to help with the bladder irritation that this chemo drug causes. It amazes me that this chemo medicine is so strong that it can irritate and burn the skin and bladder and yet it is being injected into Jeremy's veins. Of course all three chemo medications cause nausea. Zofran (medicine) helps with the nausea.  

He also ran a fever of 39 C (102.2 F). His fever made his pulse rate really high and blood pressure lower than normal. We had to stay an extra night and day.They are not sure if the fever was a side effect from his chemo treatment or a virus. They did a blood culture and it was negative, so it was not a bacterial infection. They were going to keep us Thursday night as well, to be extra cautious, but when Jeremy heard this tears rolled down his cheeks and he said in a little quiet whimper "I want to go home." They took compassion upon him and said they would reevaluate later that day, and if he had no fever, we would be able to go home that evening. Our families were praying with us that Jeremy would have no fever. Our prayers were answered and we were able to go home. Jeremy's whole countenance changed when we walked in the door. He was so happy to be home! We ate dinner together as a family and then Mike and I went to James's piano recital. Jake stayed with Jeremy. The recital was close by (at the library) and we had our cell phones (yes, I worry when I leave him!). Jake did a great job playing games with Jeremy and watching him. We have learned that as consuming as cancer can be.....life still continues. We really have to work as a family to make things happen.

When I am in the hospital I miss hearing James practice the piano. Hear is a little sample from his recital. I love this song "If You Believe" composed by Jim Brickman. The title reminds me of a scripture, Mark 5:36 "Be not afraid, only believe".