Camden is off antibiotics, off Morphine, off many other medications and the ones we need for home have been switched to oral administration. Our final hurdle remains eating and drinking. We are hoping to change tube feeds to only 16 hours a day instead of 24 hours so he does not have to hooked up to an IV pole all day at home. I am also hoping he decides that he would rather sit at the table to eat meals with us instead of having tube feeds. He is active and conversant. We walked to the other unit today to visit our transplant friends. He did his physical therapy, his tutoring for school, and we played a few board games. Each day is getting better and better: thank God! I anoint him multiple times throughout the day and pray my baby will be healed! We are on our way....he is one strong little guy!
Making strides.... Today Camden discovered that swallowing even with the tube in his throat isn't all that bad! His only preferred food is sour patch watermelon candies. (not bland: chemo does a number on taste buds). Hopefully the beginning of bigger and better things to come! He is off of continous Morphine now and has transitioned to IV Morphine every 4 hours. His pain is well controlled and I feel that weaning even from oral pain meds will go smoothly. No other issues or concerns. Camden is talking more, joking, laughing...i am getting my boy back! Radiation therapy starts between day 28 and 42, depending on how well he continues to heal from his transplant! Please continue to pray for his complete healing! xoxo So yesterday was overall a good day. They decreased Cam's morphine again. The next step is to stop continuous morphine and only do the PCA pump and from there it will switch to oral medications. They moved us out of the transplant unit and onto the oncology floor. Third move/room in 3 weeks...was hoping the next pack and unpack was for home...but the room change is the least of my concerns. Camden's little body decided to go in and out of low grade fevers all night. So he was started on 2 antibiotics and blood cultures were sent to check for infection. Fevers are very common even with negative cultures. Fever #1 has 24 hours to subside and can be treated with Tylenol. Blood cultures are sent to check for infection, and he will be on antibiotics for 48 hours. If a fever spikes again after those initial 24 hours, the cycle starts over again with blood cultures every 24 hours and additional antibiotics for 48....we bought ourselves a longer stay....but the goal is to do whatever it takes to get Camden healthy again!! He just tried physical therapy, but it didn't go so well. Still not eating. ****Praying that little cancer spot is gone after the megadose of chemo and the <5% cancer in his bone marrow is gone after the transplant!! We still have some recovery time before radiation starts. Praying, praying, praying..... ***and he threw up his nose tube this morning...again (bummer)!!! Day 12 Yesterday afternoon Camden's nose tube AGAIN AGAIN came out while vomiting. This tube goes in through his nose, down his throat and into his stomach, so when vomiting...it just simply comes out (too simply). They gave us last night and this morning to get Cam to eat in an effort to not have to replace the tube. He tried yogurt, pudding, Italian ice, soup, lollipops, a McDonalds cheeseburger....but the small amounts (bites) do not add up to his daily calorie requirements. Unfortunately, he just had another tube put in; but fortunately.... The stress of EATING, EATING, EATING...has been eliminated. We are reducing his Morphine again today. WBC: 10.74 ANC: 8,760 We met engraftment, we met our 3 days with ANC > 2,000. He is off of a lot of his medications. We will continue to wean others and hopefully be home in a few days...with or without feeding tube. Loving my rockstar!! As always, prayers and love.... Day 11: HAPPY ENGRAFTMENT DAY!! We are so proud of you Camden.....more than you could ever imagine!!! WBC 6.9 ANC 5,130 It is always a good sign when the discharge coordinator knocks on your room door to help set up discharge and home care!! (xoxo) Yesterday was another day of rest. Sometimes things get worse before they get better when your cells come in. Cam did not get worse....but he is fighting hard to get better! A special THANK YOU going out to everyone who is playing softball in Camden's honor today! You will be in our hearts and thoughts all day today! We appreciate all that you are doing to help us! We know you will have an amazing day!!!! And the prayers continue.... xoxo 7 months of physical and emotional pain
5 months of cancer treatment (out of a 13 month protocol) -biopsies, ports and lines, 5 rounds of chemotherapy, tumor removal surgery, many many weeks in the hospital, many clinic appointments, hair loss, weight loss, nausea and vomiting....only to name a few of so much more..... currently Day 18 in the hospital for a bone marrow transplant Day 10 after transplant Day 2 of engraftment Today's WBC: 2.74 Today's ANC: 2,100 Today we plan on showing Boston a little more of Camden! Yesterday was a day of rest and mucus. Today, praying things are getting better as Camden's body heals itself. They have yet to see the ROBOT to Justin Timberlake or any of Camden's other awesome dance moves. They don't know yet that Camden knows the entire song to "You don't know your beautiful." My hopes are high, but shoot for the stars right? Our day by day prayers are working to get him through this battle. Hoping his throat will heal so he can talk more easily, so he can eat and swallow, so that ng tube can come out. Praying that the treatment worked. Praying that from the top of his head to the soles of his feet/tips of his toes, every remaining cancer cell has been destroyed! Praying for our miracle! Looking forward to running, playing, laughing at normal life things, playing superheroes, swinging on our playscape, or just even snuggling up on our couch! Anxious for our countdown to discharge! Excited to hold, hug, kiss, and squeeze my baby girl! As always my friends, Please pray and Much Love........... Good Morning Day 9!!! God hears our prayers! Thank you for praying for us! Camden's WBC is up to 1,190 and we have an ANC this morning of 610! Our prayers are being answered! Thank you Jesus! Day 9.... and his ANC is up, up, up!!!!!!!! So now we pray it just continues to rise, those nasty fevers stay away, his mouth and throat heal, we can wean him from IV morphine and he eats.....SOOOO THANKFUL! Amen!!! I have always believed in God, but he is our real superhero!!! Day 8: Well, last night was probably the scariest night I have ever had. Camden's secretions were so bad. I had to continuously suction his mouth and hold an oxygen mask to his face the entire night. He was choking on mucous. With Cam never having mucositis before, we did not fully know what to expect...it was BAD! They were doing chest xrays to rule out potential "other" problems. To top it off...he vomited his ng tube AGAIN...requiring ANOTHER xray of his abdomen. AND, he had a red blood cell transfusion and fevers. BUT...Since then, his day today has been much better! I got him in the bathtub again and he has been able to rest throughout the day despite intermittent suctioning. He wasn't able to open his mouth or talk last night and he is today. They upped his morphine for better pain control. His fevers broke! And the GREAT news is that his WBC went from 50 to 60 to 270! They do not calculate ANC until his WBC is 300....so hopefully tomorrow we will be over 300...and praying tomorrow we will have an ANC of something/anything!!! We need an ANC of 500 for 3 days for discharge! Feeling thankful symptoms started late and hopefully are short lived! I am so proud of my boy!!!! Thank you Jesus for getting us through another battle!
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MommyShe's going to keep everyone up to date about my progress. Isn't she the best mommy ever? Archives
September 2021
Diagnosis: May 9, 2013
Surgery: September 2013 Transplant: September 2013 STRICT ISOLATION UNTIL January 2014 Radiation: November 2013 Antibody: January 2014 END OF TREATMENT June 9, 2014 DFMO Trial: June 2014 (27 months of DFMO) **FINISHED ALL TREATMENT JULY 25, 2016 5 years from diagnosis!! May 9, 2018 5 years from frontline!! June 9, 2019 IN REMISSION: pending (waiting for 5 year mark from maintenance). Benign Tumor: June 2019 |