Tae Kami Medical Fund

30 May 2008 - Rainbows...

 The ANZ Bank staff surprised us today with a spectacular rainbow shaped from hundreds of ballons they put together for Tae and trucked here late afternoon. We were all stunned by the incredible gesture - so symbolic of Tae's journey with cancer and the message of hope "beyond the rain". Also a lovely reminder of the love shared by so many of you on this journey. Thank you for blessing and inspiring us. Another special moment for Tae and a lifelong memory for us.

Today we had a couple of special visits from Pastors Havili and Mele Sefesi - who were special friends of Tae's grandfather, Sione Kami. Havili sang a few songs for us including a well known song he had written. Earlier on, we had a visit from Devine Tatofi and family.. Devine was part of the famous Hawaiian band, Kapena and his son Josh sang a beautiful song for Tae - she loved the morning of music.

. Happy Birthday Aioema Atiola - 50 great years!

We finally took Tae to visit the new paedreatric wing at Vaiola Hospital. Tae got us to pack a cardboard box with some of the teddy bears already collected for her to leave at the ward for kids currently in the hospital. She's impressed with the new hospital wing and enjoyed being wheeled around and making comparisons with her stay in the old hospital - especially how much better it is for patients and staff.

We finished the night with a house full of friends but Tae was fast asleep after a taking some 15-20 minutes to clear her throat during another difficult coughing bout. She was exhausted at the end of it and commented how it gets harder each time.

We continue to request your prayers for peace, strength and clarity as we wrestle through the highs and lows of our journey.

29 May - Never say its Over...

Tae was up this morning ready to do the march with her school for the opening of Parliament - Sina borrowed Mota's school uniform early this morning... so much for struggling all day yesterday with the coughing and aches. While she was getting ready we heard some noise outside and found the Tautahi Gold Rugby team had arrived straight from the airport on return from Samoa to present a Winners Medal to Tae. What a special moment for us all who were here. Thank you for honoring Tae in such a special way - she wore the winners medal all day. Tautahi won the Pacific Regional Cup and dedicated their win to her. Go Tautahi go!













We then rushed to town pushing Tae in her wheelchair so she could join in the marching - today all the secondary schools on Tongatapu march for the opening of parliament. Tae was determined to join her school. We were late so we cut into town to wait for the QSC girls to catchup. QSC was first school in the procession with Mota leading the QSC brass band.

We were taken by surprise when Mota elegantly stopped the band in front of us and walked over to hug Tae - another special moment. When the band started to march several others including Sivi broke ranks to hug Tae. Tae was then wheeled behind  the first group of marchers. Tae stayed with the girls through town and all the way back to school for the final assembly.

More pictures later tonight....

Adrenalin, spirit and the prayers of many must be a tonic to the soul and body. We would never figure last night that we would have another day like today... she was exhausted by the time she got home but raved how special it was...

Click for more pictures... special friends, family and visitors over the past 2 weeks .

28 May 2008 - Update

I think we are heading into the final stretch with Tae. Today was spent in bed with much discomfort and generally quite weak. She surprised us all by insisting on going for the evening wheelchair ride but after pushing past Saione (the Centenary Church), she asked if we could do a shorter trip. We cut left on Hala Tu'i (King's road), then past the Palace and back on the water front, the ex British High Commission and home again. She was soon fast asleep in her room.

Her ability to cough and clear her lungs is even more limited now. Some coughing sessions leave us all in tears - as she struggles to come through with her breathing. She has mentioned several times that she no longer has the energy to get through it all and she is ready to go anytime and looking forward to leaving this battered body behind. Tonight the discussions on funeral plans began again after several weeks of just enjoying the time we have together.

Yet, we still hope to get up in the morning to find her re-energized and keen to join the QSC girls on their march through town for the opening of parliament -  she mentioned earlier in the week this was something she wanted to do.

Glad to see Kosi Latu, this morning on a quick trip through the country. Also the QSC class of 95 girls who visited as well as Ungatea Fonua Kata, the Tupou High School Principal. Appreciate the continued flow of emails, comments and encouragement.  We are continuously blessed with  the knowledge that so many of you are walking this journey with us....

27 May Update

Today started off quite well with Tae reading in bed most of the morning. Dr Toa arrived during her lunch break to see her and has warned us we need to turn Tae every 2 hours for the next day or two to avoid a possible bed sore developing - introducing another uncomfortable activity to her day.  Tae was determined to go for a wheelchair ride again this afternoon and on the way home, we stopped at a downtown cafe to get a milkshake with her friends. Unfortunately, she started feeling sick so we left the girls behind and I pushed her quickly back home. I am so aware that even the wheelchair rides may not be possible soon.

Sometimes it seems like we are operating in a zone where  grim reality and hope mesh uncomfortably. She struggled through a bout of coughing this evening and gasped for air - it occurred to me that she maybe only a cough / breath away from dying - as tears rolled down her eyes. The weakened chest muscles and loss of lung capacity make it a struggle to clear her throat. A moment later her throat clears and she started smiling as she looked at us, and read  our own thoughts repeating several times "I'm alive.... hey.. Im alive!".

We had a lovely dinner this evening with Rubina Nakao and her children as well as a surprise visit from Tae's Uncles Tevita Simiki and Soa.

Also special thanks to my IUCN colleagues in Switzerland and around the world including our Oceania team in Fiji. Really appreciate the many emails, encouragement, and reaching out in support. Glad to be part of the IUCN family!

Thank you all for the comments on the website and the continued prayers !

ofa lahi atu (much love to you all) and blessings

26 May Update

We searched the Internet for more information on kidney or renal failure. We are hoping that recent signs from Tae are not pointing in that direction but will confirm tomorrow when Dr Toa visits again. Tae was up this morning insisting on a full shower. We carried her into the bathroom and despite the discomfort and pains she was able to enjoy getting her hair washed by Sina and a general shower. She immediately returned to bed and wanted to read and sleep for a few hours. This afternoon she was up again and after a round of medicines she insisted on her first wheelchair ride in several days. I pushed her through the early evening with friends Sivi and Valu and sister, Mia.

She was determined to enjoy a long walk and insisted we push her to Grandma Tae's place some 2 kms away and back again. The walks have become the highlight of her day and returning in the dimming light with the clear skies and nippy airs are something special. The signs of a possible deteriorating kidney are again a reminder of the limited time we have left.

This evening Grandma Tae and her sister Ana Taumoepeau sat with Tae and massaged both her legs. Tae spoke how ready she is to go to heaven and her confidence that when God calls her home, she is ready. She is so aware of the changes in her body and realizes that for her its just a matter of time and she continues to ask God to help to count her blessings even as she experiences the daily decline in her health.

We were happy to see various friends drop in - Fahina and her "ninja turtle dressed" son who spent the weekend insisting that Tae had to have his little blue teddy. Also the girls from Princess Latufuipeka's villa - thanks for the cake. This afternoon we were happy to see Dr Toa again and the visit from various school friends of Tae as well as Kalolaine Fusimalohi and her girls.

Today, Tae asked mom to get a QSC school uniform ready so she can be pushed to watch the Queen Salote College girls lead the marching for the opening of parliament. Her friend Mota Atiola is leading the march and will be marching in front of the QSC brass band.

'ofa atu from Tonga and thank you for your prayers and support!

23 May 2008 Weekend Update

Tongan provincial rugby team, Tautahi Gold, beat Upolu Samoa in Apia 11-6 to take out the 3 nation provincial tournament. We were all quite pleased with the result especially after the team visited Tae and dedicated their tournament for her and came from no where to give a Tongan team the title for the first time. Well done Tautahi - more details here

Tae slept through most of Saturday. Princess HRH Latufuipeka dropped in with lunch for Tae and a bunch of her people from the Villa. It was a nice informal visit and Tae strummed her song for them on the guitar before falling asleep into the afternoon and right through the night. What is obvious now is the low energy levels. Earlier in the week she was coughing blood in the morning, now its often difficult keeping her eyes focused and she is afraid she is getting cross eyed.

Sunday was also a sleepy day for Tae after briefly getting on the wheelchair at lunchtime. She then returned to bed and slept through the afternoon. This is now 3 days in a row where she has has not left the house and spending most of the time in bed.

'ofa atu from Tonga

22 May Update

Tragedy sometimes strikes so unexpectedly. Last night our neighbour, Latu got a call that her 39 year old son, Setaleki, died suddenly in Australia. Latu has been a second mom and friend to Sina and so much a part of our kids lives while in Tonga. She has also been a daily  presence in our home especially the preparations for Tae - the last thing we would have expected was for Latu to lose her eldest son. Seta is the father of 3 beautiful girls. Our thoughts and prayers are with Latu and Sunia, Lilieta, Noma, Etuate,  Heni and Melovini as well as the Seta's own wife and family.

Tae woke up yesterday depressed - wrestling with the challenge of being so immobile and the total dependence on others. We sat with her and tried to comfort her, letting her cry through it. This time the pain was more frustration and exhaustion. After 30 minutes or so she asked if we would pray with her and she prayed - this time in Tongan asking God for peace and the strength to deal with each day as it comes. We were soon having breakfast and she cheered up. She spent a day reading and watching a movie in her room before being joined late afternoon by Tau and Willie. We then went for a walk through town with them before farewelling them to catch their evening flight. Tae appreciated their energy and enthusiasm and thankful for their willingness to come from New Zealand to spend time with her. All the best from us and look forward to your aspirations, both for the band and individually, becoming a reality!

We pushed Tae into town again for an evening with her friends at Escape Cafe - Mota, Tisi, Sivi and Valu. Another special moment to give her a break from home.

Thank you again for your prayers and thoughts.

21 May - Tae's Journal

I think my dates are have been off by 2 days! We've been quite busy with Spacifix band leader Tau Manukia and side kick, Willie Manukia joining us for a couple of days from New Zealand. We have enjoyed having them as part of the family and Tae has loves the jamming - they will be leaving Thursday back to Auckland. Yesterday  HRH Princess Latufuipeka visited Tae and today it was good to see Mat Wilson, the Peace Corp crew: Ofa Koloi, Elenoa and Lose and MelenaiteTangi during the day. We have also had the  ex students from TTI in recently. There are many more that deserve thank yous. Appreciate all the love and support.

Tae started slowly this morning and then raised the idea of going out for lunch at the Pizzeria with Tau, Willy and the girls - its important to us that when she decides there is something special she wants to do - no matter how mundane - we do it.  While we were preparing to go, Tae was suddenly hit by a painful spasm that stopped her breathing and grasping desperately... she writes about it in her journal below.  10 minutes later she was determined however  to be  pushed in her wheelchair for lunch at the pizzeria and we ended up doing that and then pushing her into town for dessert in the courtyard of Escape cafe to enjoy a banana split and watch Tonga go whizzing past on Taufaahau road.

17 May 2008 Update

Belated Happy Birthdays to Uncle Steve in Port Moresby, Papua New Guinea and  Ana Vete - a regular in our household here. Ana's cake was awesome - hope the same in PNG.

Tae again started the morning slowly and rather painfully but improved as the medicine kicked in. We were happy to have Tanya Edwards and daughter Ruby in for a visit before Tae slept again through lunch. Sina and I then continued our hunt for the right kind of seafood pasta (Tae has had an urge for a fettucine seafood pasta with creamy sauce). We finally found the right pasta at a premium price and I realized I had been asking for the wrong kind all last week (I thought I knew my pastas). She loved her late lunch. Appreciated the generosity of Marco and Ana at Luna Rossa restaurant last week in cooking up a special pasta. WE are still glad she wants to eat and will have a shot at anything she feels like eating although she is limited to what she can actually chew/swallow.

Tae asked mid afternoon if I could push her into town to see some shops. It was our first time for the two of us to go into town while the shops were open. We bought stationary for her drawings, a milkshake at Escape Cafe (sitting outside under the umbrellas), books at the Friendly Islands bookshop and then visited the new Digicel shop (the new phone competitor). We then strolled passed the Palace, the waterfront and home again - just in time to meet Foi Ledger and a Digicel team who dropped in to give her a complementary phone. 

I have realized that pushing a wheelchair can be quiet a challenge on our inconsistent Tongan footpaths - Tae nearly slipped right off the chair after a front wheel ground into a soft spot. Also appreciating the challenges other wheelchair users face in Tonga and other Pacific countries.

Amazed at the reaction of so many who would wave or call out to her as we walked into town or just come to hug her and greet her. We stopped at one shop to buy a cap and the shopowner tearfully refused a payment and came out to hug her. We continue to hope that in someway, the awareness around Tae's journey will make it easier for kids facing special challenges here in Tonga and other Pacific countries and that her life inspires people to positive change!

16 May - Father's Sunday (In Tonga)

With the Tongan community the tradition is 3 special family Sundays in a row starting with the Childrens Sunday (White or May Sunday), Mothers Day and today, Fathers Sunday. We in Tonga get Fathers day twice when you count the 'official' Father's day (or everyday if we are to believe the moms).  Again its the tradtional Sunday lunch and there's another roast pig on the table as well as the 'umu' or food baked underground.  Today we are celebrating here with fathers - Paila (Sina's father), Sifa (Sina's brother), Pila (my older brother) and myself as well as Joe Enoka - Rosa's Father in Samoa and Mark Hobson who should now be back with Heather and the boys.  To all you Dad's around the world -  a wonderful and blessed day!

I've often been asked about how we cope with Tae's situation. Again - I think the answer lies in the prayers of so many and Tae's positive attitude through all this - it helps me as a father and it would not be possible without a mom as energetic as Sina. The last couple of weeks have been particular difficult with the extra care Tae requires now that she cannot move her lower body. My role has changed somewhat from being the cheer leader /encourager,  to now doing the essential  heavy lifting,  moving Tae and just helping where i can. Her perky attitude definitely makes it easier for us and we can only be thankful that she is still here and wanting to make the most of the hours when she feels better.  We are often reminded how many parents, including some we know, have lost a young child early. We are grateful that we still have this kind of time with her even though it gets tough thinking of what she has to put up with and we are thankful that she takes it so well.

Mia (9yrs) and cyclone Joy (4) help keep things in perspective,  reminding me that though this is likely the last Fathers day of any sort with Tae, there will be many more to come.  To every Dad out there - make the most of your time with your children - especially while they are living at home and treasure the time you have together. Every day of the journey is a special one and we don't need cancer to tell us that...

Being a father to Tae is a humbling experience.  Just watching her tonight as she sleeps reminds me how