Day 7 in the hospital. Life is certainly challenging while in the Cancer Care Ward here at Seattle Children’s Hospital (especially getting enough sleep). Beth and Paul chose to have me, Eemie-Grandmother Juli, here with them as Dad was able to rearrange his work schedule to pick up Julian from school each day and care for the critters. Bless him…he is taking care of big brother Julian, the cat, the dog, 8 fish in 3 separate tanks plus an army of snails that have to be fed Snello and chunks of vegetables on skewers.
Paul had lost a great deal of weight because of his contraction of Norwalk Virus (Noro). Online research told us that this virus lingers when immune systems are down. Paul is still compromised because of his chemo treatments. This also means that all the nurses, doctors and anyone entering his room must be gowned and masked. Beth and I are relegated to this room until Paul tests clear of Noro.
The nurses and staff have been so wonderful….they even deliver Beth’s Starbucks orders since we are stuck and can’t go get it. Every now and then coffee is a wonderful treat especially since all we have available here on this floor is powdered Nescafe in a packet! We do have an in-room fridge and her cold brew fixings. We also cram lots of Paul’s foods in there-his yogurt, blueberries, and other bits of yummy things.
We just found out that Paul can go home WITHOUT A FEEDING TUBE regimen! His intravenous nutrition is going great and he is gaining back his weight. This morning Beth and I both commented how much his little cheeks are filling out. Before he got so sick with hydrocephalus, Norovirus and his 3rd chemo round he was eating like a champ. He usually loves a variety of foods including those peanut butter puffs, cucumber rounds, all manner of fruits and even little meatballs and other bits of meat and chicken. Now he mainly tolerates yogurt and his puffs. : ( A really good prayer item would be that he gets his appetite back for all the foods he used to love.
Today he is getting his almost-daily dose of platelets and his regular meds for nausea and some pain meds for his sore gums and emerging molars. He also has some places in his throat that are caused from his medications that he seems to need some relief from. It is so hard to tell when a toddler that doesn’t talk needs something! We wish he could communicate it all to us.
Dad and Julian are coming for another visit today! Julian misses his momma so much. Danny has been taking home all the dirty clothes and bringing back lots of clean ones and delicacies like OREOS! It is so nice to have some cookie joy.
It looks as if they might discharge Paul as soon as his ANC is up to par! We will keep you informed.
Back in the hospital again! The week Paul has been having trouble with keeping his food and meds down after having his last chemo treatment on 9-8. We were all so happy that he had gained a pound before they began that treatment and were hopeful that he would keep his weight level on the days after. Sadly, this wasn’t to be.
After his infusion of platelets on Thursday they decided a feeding tube would be the best route to get him back on track weight-wise. Yesterday, Friday 9-14, grandmother Eemie, momma and Paul drove to the Seattle Children’s Clinic with high hopes his feeding tube insertion would go well without complication.
This was definitely a traumatic experience for EVERYONE, especially Paul! Paul was under some medication which normally would have helped keep him calm but he was determined not to have a feeding tube. After it was in, he would vomit when trying to nurse. Horrible. Even the nurses and his attending practitioner agreed that an intravenous feeding solution would work much better. So…he is now admitted into the main hospital with the wonderful medical staff keeping him happy and healing.
It will be several days before we can reevaluate whether he can go on to his next round of chemo. They want him to gain back his lost weight and get past the nausea that the last chemo caused. The next chemotherapy is a different kind which is better tolerated by children who have had trouble with the first type. We have hope that this will be the case with Paul!
The Seattle Children’s Hospital is so wonderful. The walls are full of animals, birds, plants and rivers. Even the elevators are full of fun things to see. The children and babies here have great nurses and care. There are rooms everywhere for families to go with windows that open up to the surrounding trees and views of the mountains. The family centers have refrigerators, electric kettles, microwaves and all the utensils, plates and bowls to prepare food brought from home and brought in to them from family. The cafeteria food and room service meals are so good! The prices are family friendly, too.
We will keep sending out these updates weekly so you can know what to pray for. Right now we need him to gain weight and to not be so grumpy when the doctors and nurses come to check his vitals : D. He sees a stethoscope and starts batting it away. Also, we want his next chemo to go smoothly with no nausea and/or weight loss! Thanks for sending requests to family and friends to pray. Love to all!
Yesterday Paul and his momma are back at Seattle Children’s Hospital for another round of chemo. Wednesday he had a few outpatient appointments which included one with the nutritionist. So far he has gained back an entire pound in a week! No feeding tube, at least for now, which makes EVERYONE relieved.
Paul wasn’t sad to go back to his hospital room yesterday either. His momma says he only gets upset when he sees stethoscopes, blood pressure cuffs and the little glowy-light thing they put on his toe to keep a check on his pulse and oxygen. He is such a funny little guy! There is a refrigerator in their room where they keep snacks ready to eat. He is very fond of peanut butter puffs, yogurt, gold fish crackers and fruit.
It is quite a jaunt from their house in Everett to the hospital in Seattle. With big brother, Julian, in 2nd grade, the visits while doing chemo are few on the weekdays. His dad was there all day yesterday getting momma and babe all set up in their room but will not get to hang out with them until this weekend.
The scars from his brain surgery are healing nicely. You can see the little bump on his skull where they installed his shunt for the drainage. He will have some rad scars to show off to friends when he is older : D. One of the nurses calls him “baseball boy”!
I am glad that I am able to be here until the end of September to help out with Julian and I know his other grandmother was just as happy to be here while she was here for two months this summer. Keeping things together when momma is away is always a challenge while dad is working! The family pets need love and attention, too. Bolo is a big old brut of a dog and Batman is a sweet loving kitty that keeps getting locked in the basement where he likes to sleep!
Thanks to all of you who signed up for email updates. We will try to send out at least one a week and feel free to unsubscribe at anytime. You can always come back here to check up on Paul.
Hopefully, momma and Julian will be home Sunday if all goes well!
Paul was diagnosed with a brain tumor only a few weeks after his first birthday in May. Since that time, this little fellow has been through quite a lot which included initial brain surgery on June 8. The doctors assured us that they removed all of the tumor and as soon as he was strong enough, they began Paul on a chemo treatment to ensure that any residual cancer cells would be zapped forever.
Chemo is not easy on anyone. Not only is Paul dealing with stem cell harvesting, blood tests, and nausea meds, the pressure began building up in his head from brain fluid and he had a shunt installed from his brain to his lower body cavity to have it drain away extra fluid buildup. There is a mechanism that the doctors can set to regulate the fluid drainage…space age stuff.
We are now into September and treatment 3 is coming up this next week for Paul. He has lost some weight because he contracted a stomach bug (Norovirus) at some point before he came home for a few days and he felt awful. FINALLY he is eating normally again and we can tell he is getting some weight back on him. We really don’t want him to have to endure a feeding tube! He is not going to go for that without a fight and he is very strong and opinionated!
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